US knocked out of the World Cup!! I was hoping the US would give a better showing, but maybe next time. The only conciliation I have is England joins us on the sidelines watching Germany make a run for it. For all my Euro-friends out there, I’ll be half-heartedly cheering on your teams, but I’m not getting up early to watch any of the games.
Nothing really to report. I can’t convey any improvement over last week. I exchanged emails with another Mike Miller this week that had the same cancer as I have 13 years ago and while I expressed my frustration over my slow recovery he said it’s going to be even worse than I expect. He said it took him years before he felt he was back at 100% and that the first couple of years are agonizingly slow. While I’m not happy about it, it beats the alternative. I guess I’ll have to be encouraged by every improvement, no matter how small.
Terry and I went out to dinner Friday night at one of our local fish restaurants, I ordered my usual fried fish and shrimp (small platter Vs my usual large) and as I told her as we got in the car to drive home, “well it filled the hole in my stomach, but it didn’t taste very good.” I could taste the actual fish and the coleslaw, but that great greasy fried flavor eluded me. Same thing happened at Saturday dinner, Terry bought some expensive steaks and I grilled them to perfection (I was told), but it was wasted on me; I couldn’t taste the meat at all. I might as well have been eating cardboard.
We have a new foster rescue in the house. Quincy was found wandering the streets of Dallas, TX. He made his way here to San Antonio through a group of dedicated rescuers. He’s a Bouvier De Flanders want-to-be. He is under weight, scraggly and in serious need of grooming, but he has a great personality and is getting alone with our two beasties famously. I’m sure his stay with us will be short.
So, I’ve managed to stretch this post about nothing into 5 paragraphs, not bad. I hope it wasn’t a waste of your time. I’ll try harder at improving over the next week.
Cheers,
Miller, out
Sunday, June 27, 2010
Sunday, June 20, 2010
It was a good week, it was a bad week.
Not much to say this week, very little progress. While I don’t seem to have a sore throat, it seems to dry out very quickly and I have to drink a lot to keep it lubed. The two spots on my tongue that made it hard to eat seem to have improved this week, I hope that continues. I ate almost anything I wanted this week and some things I shouldn’t have (dough nuts). I can still only eat so much before my throat gets sore, thus limiting how much I eat. That’s probably a good thing. I do have some issues at night. The lack of working salivary glands makes my mouth and throat dry out quickly and I wake up with my tongue stuck to the roof of my mouth and my lips to my teeth. In the lower part of my throat it seems like it’s coated with thick saliva, so when I wake up and take a drink to lubricate everything it still seems like there is stuff still stuck in my lower throat. So, I swallow a lot for 10-15 minutes trying to clear the crap out of my throat. It makes getting back to sleep a bit of a chore. It’s the same when I wake up in the morning, that feeling of gunk in my throat until after I eat something. I guess that clears all the gunk out.
It was a good week for renewing old friendships. I hosted a meeting on Monday and Tuesday through Friday another organization hosted a meeting I attended here in San Antonio. It was an international meeting so I met up with a few folks that I haven’t seem since last year prior to my diagnosis and a few folks here in town that hadn’t gotten the word of my illness. It was encouraging to meet up with them. They got to see how well I’m improving and wished me well. It gave me a lift.
I was brought back to reality when I inquired about another colleague that had been diagnosed with throat cancer about a year prior to me; he unfortunately is doing very poorly and isn’t expected to last much longer. His cancer, a much different cancer than mine, has spread and there isn’t much more the doctors can do for him. I understand he put up a valiant fight and was positive all the way through all of his treatments and surgeries. He was obviously a very strong willed person. It’s amazing what strength people have inside them. I know there were days when I was really beaten down, but I knew in a short time things would get better, so I made it through that day and on to the next. Sam kept finding out things weren’t going well, his cancer had spread and he was going to have to have another treatment, he’d been radiated to the max, so they would have to use more chemo. Everyone knows cancer treatments are hard on a body and when you have to endure more and more different treatments it will just beat you down so the only thing keeping you going is your will. That’s when your metal will show through. I never came anywhere close to that, Sam’s my hero.
But, like Frank Sinatra sang, “that’s life . . . flying high in April, shot down in May.” My week started out great, and then I heard about Sam. Life has a way of slapping you up side the head and injecting reality at the least expected moments. Again I look at the calendar to see what has transpired since January and there are still 6 months left in this year . . . it has got to get better! Don’t read anything into that. I am convinced things will return to normal, and things will get better. A number a years from now 2010 will be a distant memory.
So, here’s to next week. I sense improvement is at hand.
Cheers,
Miller, out
It was a good week for renewing old friendships. I hosted a meeting on Monday and Tuesday through Friday another organization hosted a meeting I attended here in San Antonio. It was an international meeting so I met up with a few folks that I haven’t seem since last year prior to my diagnosis and a few folks here in town that hadn’t gotten the word of my illness. It was encouraging to meet up with them. They got to see how well I’m improving and wished me well. It gave me a lift.
I was brought back to reality when I inquired about another colleague that had been diagnosed with throat cancer about a year prior to me; he unfortunately is doing very poorly and isn’t expected to last much longer. His cancer, a much different cancer than mine, has spread and there isn’t much more the doctors can do for him. I understand he put up a valiant fight and was positive all the way through all of his treatments and surgeries. He was obviously a very strong willed person. It’s amazing what strength people have inside them. I know there were days when I was really beaten down, but I knew in a short time things would get better, so I made it through that day and on to the next. Sam kept finding out things weren’t going well, his cancer had spread and he was going to have to have another treatment, he’d been radiated to the max, so they would have to use more chemo. Everyone knows cancer treatments are hard on a body and when you have to endure more and more different treatments it will just beat you down so the only thing keeping you going is your will. That’s when your metal will show through. I never came anywhere close to that, Sam’s my hero.
But, like Frank Sinatra sang, “that’s life . . . flying high in April, shot down in May.” My week started out great, and then I heard about Sam. Life has a way of slapping you up side the head and injecting reality at the least expected moments. Again I look at the calendar to see what has transpired since January and there are still 6 months left in this year . . . it has got to get better! Don’t read anything into that. I am convinced things will return to normal, and things will get better. A number a years from now 2010 will be a distant memory.
So, here’s to next week. I sense improvement is at hand.
Cheers,
Miller, out
Sunday, June 13, 2010
2010 half over, I hope the second half is better than the first
Terry and I returned from Green Bay on 8 June. On 26 May Terry was called back to Green Bay because her mother was back in the hospital with pneumonia symptoms and she wasn’t doing well. Terry and her niece Lissa got on the first plane and arrived around 10:00pm. They spent the night at the hospital monitoring her mother’s condition. On the 28th Lu decided she had had enough and was ready to pass. Arrangements were made for her to go home, but she didn’t make it through the night, she passed quietly on her own terms.
Because Lu had been improving and we weren’t sure how she was going to react to being readmitted to the hospital I didn’t travel to Green Bay on the 26th. I was watching the 4 dogs, our 2 and our niece’s 2. Luckily, when I got the call our good friend Dagi offered to watch the dogs and get me to the airport. So I arrived in Green Bay on the 29th.
It was a loooong holiday weekend and the funeral was scheduled for Tuesday. The funeral was exactly what Lu wanted, limited, respectful and attended by all her friends and family. The rest of the week was taken up with paper work, appointments and inventorying the house. Terry was appointed Lu’s executor and will have to deal with all of that stress and administrivia.
Terry’s niece Lissa and her cousin Karen and her husband Dave were amazing through all of Lu’s illness. They unselfishly spent uncounted hours both at the hospital and nursing home making sure she was comfortable and her needs were being met. The 6 of us made up our close knit support group.
Amazingly, as I passed through the 8th week post radiation, chemotherapy my condition seemed to improve daily. I’m now eating almost everything and my ability to taste is back about 75%. I still have trouble with bread and other dry foods and need a lot of water to get through a meal. It’s still not entirely comfortable to eat, my throat still gets sore about ¾ of the way through the meal and I normally stop eating prior to becoming full. And I still have some issues with my tongue as well, but it won’t be long before I’ll be eating normally. Most of the thick stringy saliva is gone, except first thing in the morning. I sleep a little better, at least in longer stints. I still wake up with a very dry mouth and throat 3 or 4 times a night and have to drink some water.
Obviously, I didn’t make my business trip to the UK. I felt it was better to stay in Green Bay with Terry and help her get through the week. As it is it probably wouldn’t have been a good idea to make the trip anyway. The long travel time probably would have been too much for me. I believe now that in a couple of weeks I’ll be well enough to resume my travel schedule.
On the bright side the FIFA World Cup started and the US managed a draw with the UK. In my mind that was as good as a win. And of course Germany decimated Australia. Sitting at home watching on the big screen with a glass of filtered water was ok, but it brought back memories of many a night at O’Reillly’s in Brussels with my euro-mates swilling Guinness and watching the premier leagues. Maybe later in the year.
The last 6 months have been fraught with stress and frustration; I’m hoping the remaining 6 months will be an improvement.
That’s it for this update; hopefully, I’ll have better news next time.
Miller, out
Because Lu had been improving and we weren’t sure how she was going to react to being readmitted to the hospital I didn’t travel to Green Bay on the 26th. I was watching the 4 dogs, our 2 and our niece’s 2. Luckily, when I got the call our good friend Dagi offered to watch the dogs and get me to the airport. So I arrived in Green Bay on the 29th.
It was a loooong holiday weekend and the funeral was scheduled for Tuesday. The funeral was exactly what Lu wanted, limited, respectful and attended by all her friends and family. The rest of the week was taken up with paper work, appointments and inventorying the house. Terry was appointed Lu’s executor and will have to deal with all of that stress and administrivia.
Terry’s niece Lissa and her cousin Karen and her husband Dave were amazing through all of Lu’s illness. They unselfishly spent uncounted hours both at the hospital and nursing home making sure she was comfortable and her needs were being met. The 6 of us made up our close knit support group.
Amazingly, as I passed through the 8th week post radiation, chemotherapy my condition seemed to improve daily. I’m now eating almost everything and my ability to taste is back about 75%. I still have trouble with bread and other dry foods and need a lot of water to get through a meal. It’s still not entirely comfortable to eat, my throat still gets sore about ¾ of the way through the meal and I normally stop eating prior to becoming full. And I still have some issues with my tongue as well, but it won’t be long before I’ll be eating normally. Most of the thick stringy saliva is gone, except first thing in the morning. I sleep a little better, at least in longer stints. I still wake up with a very dry mouth and throat 3 or 4 times a night and have to drink some water.
Obviously, I didn’t make my business trip to the UK. I felt it was better to stay in Green Bay with Terry and help her get through the week. As it is it probably wouldn’t have been a good idea to make the trip anyway. The long travel time probably would have been too much for me. I believe now that in a couple of weeks I’ll be well enough to resume my travel schedule.
On the bright side the FIFA World Cup started and the US managed a draw with the UK. In my mind that was as good as a win. And of course Germany decimated Australia. Sitting at home watching on the big screen with a glass of filtered water was ok, but it brought back memories of many a night at O’Reillly’s in Brussels with my euro-mates swilling Guinness and watching the premier leagues. Maybe later in the year.
The last 6 months have been fraught with stress and frustration; I’m hoping the remaining 6 months will be an improvement.
That’s it for this update; hopefully, I’ll have better news next time.
Miller, out
Tuesday, May 25, 2010
Where has all the time gone ?
Well it’s been 2 ½ weeks since my last update. Sorry it’s taken so long, but there really hasn’t been anything to report. There has been a negligible improvement in my sore throat, but that’s about it.
I saw my ENT doctor last Wednesday and he said I was doing as well as could be expected. He scoped my throat and said the primary tumor site is healing well and there were no indications of a recurrence. He didn’t have much of an explanation for my continued sore throat and tongue except that it’s hard to actually tell when the radiation treatment actually ends and when the healing process begins and ends. He said I should be feeling better in a couple of weeks, months etc. I told him I was getting frustrated with the slow healing process. He did give me an additional prescription for DEXAMETHASONE, a potent synthetic member of the glucocorticoid class of steroid drugs. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of the naturally occurring hormone hydrocortisone and 4-5 times of prednisone, it’s normally taken orally and swallowed, but he is only having me gargle with it. It seems to be helping.
I haven’t taken a pain killer in 3 days, but my throat still gets what seem to be tender dry spots during the day. I need a shot of water every 15 – 20 minutes to keep the throat lubed. My tongue is also still tender, but the right side has healed to the point where chewing on that side isn’t too painful. So eating the last couple of days has gotten better. I’m also sleeping better. I’ve graduated to sleeping on my sides again, Yaaaaaa !!!!! I hated sleeping on my back. I only get up 2 – 3 times during the night now. I don’t have to clear my throat as much. I still have nasty thick saliva, but it doesn’t seem to gather in my throat anywhere near as much as it once did. When I wake up in the morning my throat is dry and tender, but 4 – 5 swallows of water seem to sooth things a bit.
We did a bunch of yard work this last weekend. It tired me out and I had to rest often but the activity did me good.
Long weekend coming up (Memorial Day), I wanted to take the RV out to the lake, but Terry thought it would be too much for me. I disagree, but she’ll win out.
I have a business trip scheduled for the 2nd week of June to the United Kingdom, but I’ll make up my mind next week if I’m actually going to attend. I need to be eating better and have little to no pain if I’m going to resume my world travels and I’m just not there yet.
So that’s it, not much change, but some improvement. ENT Doctor wants to see me again in July for a follow-up.
Back at ya a little sooner next time.
Miller, out
I saw my ENT doctor last Wednesday and he said I was doing as well as could be expected. He scoped my throat and said the primary tumor site is healing well and there were no indications of a recurrence. He didn’t have much of an explanation for my continued sore throat and tongue except that it’s hard to actually tell when the radiation treatment actually ends and when the healing process begins and ends. He said I should be feeling better in a couple of weeks, months etc. I told him I was getting frustrated with the slow healing process. He did give me an additional prescription for DEXAMETHASONE, a potent synthetic member of the glucocorticoid class of steroid drugs. It acts as an anti-inflammatory and immunosuppressant. Its potency is about 20-30 times that of the naturally occurring hormone hydrocortisone and 4-5 times of prednisone, it’s normally taken orally and swallowed, but he is only having me gargle with it. It seems to be helping.
I haven’t taken a pain killer in 3 days, but my throat still gets what seem to be tender dry spots during the day. I need a shot of water every 15 – 20 minutes to keep the throat lubed. My tongue is also still tender, but the right side has healed to the point where chewing on that side isn’t too painful. So eating the last couple of days has gotten better. I’m also sleeping better. I’ve graduated to sleeping on my sides again, Yaaaaaa !!!!! I hated sleeping on my back. I only get up 2 – 3 times during the night now. I don’t have to clear my throat as much. I still have nasty thick saliva, but it doesn’t seem to gather in my throat anywhere near as much as it once did. When I wake up in the morning my throat is dry and tender, but 4 – 5 swallows of water seem to sooth things a bit.
We did a bunch of yard work this last weekend. It tired me out and I had to rest often but the activity did me good.
Long weekend coming up (Memorial Day), I wanted to take the RV out to the lake, but Terry thought it would be too much for me. I disagree, but she’ll win out.
I have a business trip scheduled for the 2nd week of June to the United Kingdom, but I’ll make up my mind next week if I’m actually going to attend. I need to be eating better and have little to no pain if I’m going to resume my world travels and I’m just not there yet.
So that’s it, not much change, but some improvement. ENT Doctor wants to see me again in July for a follow-up.
Back at ya a little sooner next time.
Miller, out
Sunday, May 9, 2010
Mothers Day
Terry is on her way back to Texas from Green Bay. Her mother was moved to an assisted living facility on Thursday and seems to be settling in ok. She’s not thrilled to be there but understands it’s only a transition until she can take care of herself again. She should only be there 2 weeks. Terry has been amazing in her dedication to her mother and making sure she’s getting the best care. I know it’s been very stressful for her, I hope she can decompress a bit once she’s home.
I got my Percocet prescription renewed and I’ve been taking 2 a day up until Saturday. I didn’t take my usual morning dose and it didn’t seem to make much difference until later in the day. I also didn’t take a morning dose this morning and it seems somewhat bearable. It doesn’t make sense to me. The sore throat is uncomfortable, but not too painful until I try and swallow something.
I’ve still got a sore throat and my tongue and mouth are still sore as well. I managed to eat some meals containing noodles. On my trip back to San Antonio I had a lay-over in Chicago; I needed to eat so I tried a noodle dish from one of the Asian restaurants there at the food court. It wasn’t too uncomfortable to eat, so I tried a couple of quickie noodle dishes (add water, microwave) from the Asian section of our grocery store when I got home. Other then that I’m still mainly eating soup, boost and yogurt. I’m hovering around 150 lbs, that’s down from around 180 lbs back in December. It wouldn’t bother me too much, but a good portion of those 30 lbs was lean muscle mass not just fat.
I kind of feel like I’ve been hit by a truck today. I feel like I’ve got a cold, except I don’t have any of the head cold symptoms, I’m just achy all over. My hands hurt and I’ve got a band of mild pain that runs from under my arms across my chest. My back feels like I’ve been in the gym doing back exercises.
This could be a Erbitux side effect. One of the other cancer patients that was prescribed Erbitux complained of skin pain a couple of weeks after his treatments had stopped. He said his skin was very sensitive and painful and it hurt having clothes on. I’m hoping my body pain isn’t going that route. I’m not sure I want to take any more time off from work and I doubt Terry would be too impressed if all I wanted to do is sit around the house naked.
Thursday and Friday went well at work. I feel a bit drained during the mid-afternoon, but that may be attributed somewhat to boredom, the main computer I use is down and I’m not able to communicate with some of my European co-workers or access the material on that computer. It’s a good thing I’m a salaried employee and don’t have to account for a certain amount of production.
So, it’s been another unremarkable week as far as my recovery is concerned. I keep expecting to wake up one morning without a sore throat or tongue. I know that’s going to happen one day, I just want it to be sooner rather than later. This coming Tuesday will be 6 weeks since my last radiation treatment and I’m not sure I’ve made much improvement other than not having to take as much pain relief as I was taking then.
So, I guess that’s it for this up-date.
Y’all take care.
Miller, out
I got my Percocet prescription renewed and I’ve been taking 2 a day up until Saturday. I didn’t take my usual morning dose and it didn’t seem to make much difference until later in the day. I also didn’t take a morning dose this morning and it seems somewhat bearable. It doesn’t make sense to me. The sore throat is uncomfortable, but not too painful until I try and swallow something.
I’ve still got a sore throat and my tongue and mouth are still sore as well. I managed to eat some meals containing noodles. On my trip back to San Antonio I had a lay-over in Chicago; I needed to eat so I tried a noodle dish from one of the Asian restaurants there at the food court. It wasn’t too uncomfortable to eat, so I tried a couple of quickie noodle dishes (add water, microwave) from the Asian section of our grocery store when I got home. Other then that I’m still mainly eating soup, boost and yogurt. I’m hovering around 150 lbs, that’s down from around 180 lbs back in December. It wouldn’t bother me too much, but a good portion of those 30 lbs was lean muscle mass not just fat.
I kind of feel like I’ve been hit by a truck today. I feel like I’ve got a cold, except I don’t have any of the head cold symptoms, I’m just achy all over. My hands hurt and I’ve got a band of mild pain that runs from under my arms across my chest. My back feels like I’ve been in the gym doing back exercises.
This could be a Erbitux side effect. One of the other cancer patients that was prescribed Erbitux complained of skin pain a couple of weeks after his treatments had stopped. He said his skin was very sensitive and painful and it hurt having clothes on. I’m hoping my body pain isn’t going that route. I’m not sure I want to take any more time off from work and I doubt Terry would be too impressed if all I wanted to do is sit around the house naked.
Thursday and Friday went well at work. I feel a bit drained during the mid-afternoon, but that may be attributed somewhat to boredom, the main computer I use is down and I’m not able to communicate with some of my European co-workers or access the material on that computer. It’s a good thing I’m a salaried employee and don’t have to account for a certain amount of production.
So, it’s been another unremarkable week as far as my recovery is concerned. I keep expecting to wake up one morning without a sore throat or tongue. I know that’s going to happen one day, I just want it to be sooner rather than later. This coming Tuesday will be 6 weeks since my last radiation treatment and I’m not sure I’ve made much improvement other than not having to take as much pain relief as I was taking then.
So, I guess that’s it for this up-date.
Y’all take care.
Miller, out
Sunday, May 2, 2010
Reversal of Fortunes
I started the week out with a full day at work on Monday. It wasn’t easy getting out of bed at 4:45am, but it’s the routine I’ll have to get used to again. Then Tuesday arrived.
About 8:00am Tuesday morning Terry called me at work and said her mother had been admitted to the hospital in Green Bay, Wisconsin with a bowel obstruction. This is the same woman that celebrated her 95th birthday back in mid-April, so it was a serious situation. I made quick airline reservations and we were on our way to Green Bay at 2:30 Tuesday afternoon. We arrived at 8:30pm and went straight to the hospital to find out she had made it through the surgery on her bowel and was resting comfortably. The doctor hoped for a one hour procedure, but it ended up being a four hour surgery.
Our trip to Green Bay was definitely better then the trip Terry made back in April. We left San Antonio and flew to Chicago, had a 2 hour layover and then a 45 minute flight to Green Bay. I popped a Percocet just prior to leaving the house and I took a couple of Tylenol in Chicago. We got a bowl of soup in Chicago and that got me through until we got to Terry’s mother’s home later that night.
So now instead of being the care receiver, I’m now a care giver. We worked out a schedule where Terry, I, Karen (Terry’s niece) and her husband Dave spend about 17 hours of the day in her hospital room. There isn’t much we can do, but for some reason she expects someone to be there. She’s a feisty old coot and keeps everyone on their toes. Even the nurses caught on real quick, she’s not to be messed with. She’ll let you know in no uncertain terms if she’s unhappy with what is going on. She’s not happy about being in the hospital and wants to leave as soon as possible. She didn’t know it at first, but the doctor said she will probably have to spend about 2 weeks in some kind of assisted care before she can go back to living alone in her own home. I think she’s coming around to the idea, but isn’t happy about it. If everything goes ok, she should be released sometime early next week. Meanwhile we’ll be keeping watch over her.
But seeing as this blog is all about “me”, let me give you my update. As I said earlier, I was beginning full days back at work and I guess that was going to work out ok. I’ve pretty much been putting in full days here.
I’m still not on solid food. I’m still doing soft cereal in the morning along with a bottle of Boost for breakfast. For lunch I do another Boost and a carton of yogurt. We found some really good Greek yogurt here in Green Bay, I’ll have to look around and see if I can find it in San Antonio. For dinner we’ve been stopping and picking up some soup. I can get that down ok if the vegetables are cooked soft enough. It sometimes still raises some sores in my mouth eating the soup, but I think that may have something to do with the temperature of the soup when I eat it. I’m going to find something different tomorrow, I’m getting a little tired of soup. This afternoon Terry called me from the hospital and requested that I pick up some take out from one of our favorite restaurants, Kroll’s, they have great hamburgers. I went there ordered a couple of burgers, fries, a chocolate milk shake and some soup. As I was driving from the restaurant to the hospital the smell of the burgers and fries was driving me crazy, I almost pulled over and rubbed the burgers and fries all over me hoping to get the benefit via osmosis.
I woke up with a very sore throat Saturday morning and the Percocet didn’t do much to ease the pain. I went through a bit more Tylenol and Ibuprofen than I probably should have, but I made it through the day. I think the humidity level is really low in the hospital and here in Green Bay and I think that may have an effect on my throat. I only have 10 Percocet left and I want to use it judiciously. I definitely want enough for the trip back to San Antonio.
I guess the biggest obstacle other than having to deal with taking care of Terry’s mother is finding me food to eat that I can get down with as little pain as possible. The usual enjoyment of going home is experiencing the food of our youth and visiting with family and friends. In my condition that enjoyment is muted and I have to sit and watch everyone else enjoy themselves eating all my favorites. I’ll get over it. One day soon I’ll get to eat anything I want. It’s the price I pay now for eternal happiness later on. I’m going to heaven, I’m going to heaven, I’m going to heaven.
So, the adventure continues. I’m making progress I guess, if ever so slight. It’s frustrating that my throat isn’t improving at a more rapid rate, but I have no other option than just plodding along and seeing what life sets before me next week.
Cheers,
Miller, out
About 8:00am Tuesday morning Terry called me at work and said her mother had been admitted to the hospital in Green Bay, Wisconsin with a bowel obstruction. This is the same woman that celebrated her 95th birthday back in mid-April, so it was a serious situation. I made quick airline reservations and we were on our way to Green Bay at 2:30 Tuesday afternoon. We arrived at 8:30pm and went straight to the hospital to find out she had made it through the surgery on her bowel and was resting comfortably. The doctor hoped for a one hour procedure, but it ended up being a four hour surgery.
Our trip to Green Bay was definitely better then the trip Terry made back in April. We left San Antonio and flew to Chicago, had a 2 hour layover and then a 45 minute flight to Green Bay. I popped a Percocet just prior to leaving the house and I took a couple of Tylenol in Chicago. We got a bowl of soup in Chicago and that got me through until we got to Terry’s mother’s home later that night.
So now instead of being the care receiver, I’m now a care giver. We worked out a schedule where Terry, I, Karen (Terry’s niece) and her husband Dave spend about 17 hours of the day in her hospital room. There isn’t much we can do, but for some reason she expects someone to be there. She’s a feisty old coot and keeps everyone on their toes. Even the nurses caught on real quick, she’s not to be messed with. She’ll let you know in no uncertain terms if she’s unhappy with what is going on. She’s not happy about being in the hospital and wants to leave as soon as possible. She didn’t know it at first, but the doctor said she will probably have to spend about 2 weeks in some kind of assisted care before she can go back to living alone in her own home. I think she’s coming around to the idea, but isn’t happy about it. If everything goes ok, she should be released sometime early next week. Meanwhile we’ll be keeping watch over her.
But seeing as this blog is all about “me”, let me give you my update. As I said earlier, I was beginning full days back at work and I guess that was going to work out ok. I’ve pretty much been putting in full days here.
I’m still not on solid food. I’m still doing soft cereal in the morning along with a bottle of Boost for breakfast. For lunch I do another Boost and a carton of yogurt. We found some really good Greek yogurt here in Green Bay, I’ll have to look around and see if I can find it in San Antonio. For dinner we’ve been stopping and picking up some soup. I can get that down ok if the vegetables are cooked soft enough. It sometimes still raises some sores in my mouth eating the soup, but I think that may have something to do with the temperature of the soup when I eat it. I’m going to find something different tomorrow, I’m getting a little tired of soup. This afternoon Terry called me from the hospital and requested that I pick up some take out from one of our favorite restaurants, Kroll’s, they have great hamburgers. I went there ordered a couple of burgers, fries, a chocolate milk shake and some soup. As I was driving from the restaurant to the hospital the smell of the burgers and fries was driving me crazy, I almost pulled over and rubbed the burgers and fries all over me hoping to get the benefit via osmosis.
I woke up with a very sore throat Saturday morning and the Percocet didn’t do much to ease the pain. I went through a bit more Tylenol and Ibuprofen than I probably should have, but I made it through the day. I think the humidity level is really low in the hospital and here in Green Bay and I think that may have an effect on my throat. I only have 10 Percocet left and I want to use it judiciously. I definitely want enough for the trip back to San Antonio.
I guess the biggest obstacle other than having to deal with taking care of Terry’s mother is finding me food to eat that I can get down with as little pain as possible. The usual enjoyment of going home is experiencing the food of our youth and visiting with family and friends. In my condition that enjoyment is muted and I have to sit and watch everyone else enjoy themselves eating all my favorites. I’ll get over it. One day soon I’ll get to eat anything I want. It’s the price I pay now for eternal happiness later on. I’m going to heaven, I’m going to heaven, I’m going to heaven.
So, the adventure continues. I’m making progress I guess, if ever so slight. It’s frustrating that my throat isn’t improving at a more rapid rate, but I have no other option than just plodding along and seeing what life sets before me next week.
Cheers,
Miller, out
Sunday, April 25, 2010
Slow progress
Beautiful day, 80 degrees, sitting out on the deck, enjoying the spring weather, a Guinness would be nice, but the throat just won’t cooperate yet. Terry opened a bottle of red wine this weekend and I tried a couple of sips. Alcohol doesn’t seem to bother the throat, but the wine sucks all the wet out of my mouth. It didn’t taste all that good either, looks like it’ll be a while before I’ll be enjoying wine. My sense of taste is coming back, but my mouth isn’t cooperating.
I went back to work this week. I did two ½ days, Wednesday and Thursday, I could get used to going in at 11:00 and getting off at 3:30. Friday, we had an all hands call first thing in the morning so I showed up for that. The boss cut us loose around noon. I plan on full days from now on, starting Monday.
I owe an apology to a few of you out there that thought I was being a bit sassy in my first paragraph of my last blog. I guess my attempt at sarcastic humor failed and ended up coming across a bit caustic. I realize y’all are just checking in to see how I’m doing and you actually look forward to my weekly status update. I’ll do my best to stay on schedule from now on.
Eating solid food isn’t going as well as I expected I seem to be irritating my mouth and throat and it’s become very uncomfortable the last few days. I had cut down to one Percocet a day, but had to push it back up to two due to the discomfort. I’ll try going back to mush and the feeding tube for a few days and see if things improve. I hope this is just a short term set back.
I also went to the gym 3 times this week. Oh my gawd I’m a wimp. In addition to loosing 30 pounds, I’ve lost a lot of my strength. It shouldn’t take too long to get back in shape, as long as I take it easy and don’t push it too much. I can already see an improvement in my stamina and my desire to eat more.
The radiation burn on my neck has pretty much healed. I’m not slathering up with the supper moisturizer, except at night. I’m just using the regular stuff now. That’s a good thing, I’ve trashed a number of T-shirts with the supper moisturizer and I’ll be going back to wearing dress shirts for work, I don’t need to mess any of them up. Speaking of work clothes, I had to hunt around in my closet to find a few pair of pants that fit my new svelte figure. I wonder how long I’ll be able to keep the pounds off.
I guess that’s it for this up-date. Hopefully we’ll see some progress with the throat over the next week.
Cheers,
Miller, out
I went back to work this week. I did two ½ days, Wednesday and Thursday, I could get used to going in at 11:00 and getting off at 3:30. Friday, we had an all hands call first thing in the morning so I showed up for that. The boss cut us loose around noon. I plan on full days from now on, starting Monday.
I owe an apology to a few of you out there that thought I was being a bit sassy in my first paragraph of my last blog. I guess my attempt at sarcastic humor failed and ended up coming across a bit caustic. I realize y’all are just checking in to see how I’m doing and you actually look forward to my weekly status update. I’ll do my best to stay on schedule from now on.
Eating solid food isn’t going as well as I expected I seem to be irritating my mouth and throat and it’s become very uncomfortable the last few days. I had cut down to one Percocet a day, but had to push it back up to two due to the discomfort. I’ll try going back to mush and the feeding tube for a few days and see if things improve. I hope this is just a short term set back.
I also went to the gym 3 times this week. Oh my gawd I’m a wimp. In addition to loosing 30 pounds, I’ve lost a lot of my strength. It shouldn’t take too long to get back in shape, as long as I take it easy and don’t push it too much. I can already see an improvement in my stamina and my desire to eat more.
The radiation burn on my neck has pretty much healed. I’m not slathering up with the supper moisturizer, except at night. I’m just using the regular stuff now. That’s a good thing, I’ve trashed a number of T-shirts with the supper moisturizer and I’ll be going back to wearing dress shirts for work, I don’t need to mess any of them up. Speaking of work clothes, I had to hunt around in my closet to find a few pair of pants that fit my new svelte figure. I wonder how long I’ll be able to keep the pounds off.
I guess that’s it for this up-date. Hopefully we’ll see some progress with the throat over the next week.
Cheers,
Miller, out
Monday, April 19, 2010
Groundhog Day - again
Evidently there is someone out there that is living a lonelier, misbegotten, wasted, miserable, life than I currently am, because I heard someone has asked what was going on, I hadn’t posted my blog on Sunday. Get a life! I’ve also become aware there are some unregistered followers (voyeures) who have been following my blog. I hope you’re following my blog as a concerned friend and you are truly interested in my quick and complete recovery. It certainly can’t be because of the writing.
Well, I was a little busy this weekend, I ventured out twice with Terry. Saturday, we went out to run a few errands and make a pilgrimage to Sam’s Club (it’s not the weekend unless we visit Sam’s). On Sunday we went on a shopping expedition for a Black & Decker battery operated, hand held leaf blower. That took 3 stores. We also visited the local nursery to replenish a few plants and to get some herbs.
So, that doesn’t sound like much, but it took a lot out of me and instead of blogging, I took a nap.
Back to the adventure . . .
Terry returned from Green Bay on Monday (an uneventful return trip), the beasties and I were happy to see her and listen to her stories of the grand birthday celebration for her mother.
I made further progress weaning myself off the dreaded narcotic Percocet and actually managed 2 days where I didn’t take any Percs. Notice I only said 2 days. I don’t know if it’s the nature of the healing process or I was operating on residual pain killer, but those two days were relatively pain free, then the pain level went up and I resorted to a modest application of pain relief from Percocet again. I’m down to 1 or 2 a day now with the addition of Tylenol or Ibuprofen. (I’ve got 30 Percocet left, and Dr. Akins didn’t sound like he was inclined to extend my prescription past that remaining amount.)
I’ve visited with all three of my doctors this week and they all seem pleased with my on going recovery, I on the other hand am unimpressed. I expected a much quicker recovery, but it doesn’t seem to be in the cards. I have been gauging my treatment and recovery on how the outside of my neck has reacted to the radiation treatment. The first 10 days or so of my treatment I couldn’t tell much was going on. As time went on my neck began to display signs of the radiation burn and it reached it’s height about 5 – 10 days after my last treatment. I had a serious looking sun burn on my neck. Check out the earlier posted pictures. I could tell by what was going on on the outside of my neck serious things were going on inside my throat. The pain in my throat increased with the obvious damage going on outside on my neck. Once the treatment was over and my neck started to show signs of healing, I figured the same healing was going on in my throat. Nope, not so much.
I can’t explain what’s going on in my throat. One day the upper part of my throat will be sore, the next day the lower part of my throat will be sore, some days my tongue is very sensitive and some days I think I’m making good progress. The next day I’m reaching for the Percocet. And of course I’m fed up and frustrated with the amount of slimy thick mucus saliva. I could stand at the sink and gargle 24 hours a day and still never clear all that crap out of my throat. The doctors tell me it should clear up in a few weeks, or it could hang on for a few months, or maybe never fully clear up. I love it when they are so precise.
Two items of note: One, I returned to the gym today. It’s been about 4 weeks since I last went, mainly due to the radiation burn on my neck. I have lost a lot of weight and my energy level is way down and I know the only way to take care of that is to get back in the gym and start eating better. Which brings me to two; I’ve started eating one meal a day of regular solid food. My sense of taste is returning, ever so slightly, but returning. If I medicate just right and accept a level of serious discomfort I’m able to finish a modest amount of a regular sized meal. On Saturday I made Salmon and grilled vegetables, on Sunday I grilled steak and potatoes and added some of the grilled vegetables left from Saturday. Monday evening we ate left-over’s from Saturday and Sunday. I must say it tasted fine (thanks to the chef), and I did manage to eat about a ladies portion of each meal. But, it was torture. I did not enjoy any of those three meals.
It marks a step forward. I’m not sure why I decided to try solid food, other than I am thoroughly fed up with the pureed gruel I’ve been subsisting on for the last 4 weeks. Maybe somewhere in the back of my mind I’m thinking if I act like everything is normal again then maybe my recovery will accelerate and match my actions. Will my mouth to get better. We’ll see.
Dr. Eller, the doctor that diagnosed my cancer, has taken over my recovery and future treatment. I saw him for the first time since January, when we were deciding what my treatment should be. Both Doctors Richard and Akins will not see me again for 2 – 3 months, to follow-up on my chemo/radiation side effects. So they have pretty much turned me back over to Dr. Eller. When I saw him last Friday, he did a very thorough examination and scoped my throat. There was no sign of the tumor on my tongue (woo, hooo !!!!) He is cautiously optimistic things are going well. We plan on scheduling a full body PET scan sometime in late June or early July to search for any other occurrences of cancer. He did reiterate my prognosis is good and if the PET scan comes back negative, I’ve got a very good chance of spending a good number of years enjoying a healthy long life. (this is where everyone crosses their fingers)
I plan on returning to work this week, probably on Wednesday. I figure half days at first, then we’ll see how it goes next week. I hope to make it as easy on my co-workers as possible. I’ll try and not fall asleep at my desk, I will not put anything in my feeding tube while at my desk, and I’ll try and keep the spitting to a minimum. (maybe I’ll borrow one of Stu’s spit canteens)
Let me close by going back to the first paragraph. This hasn’t been a fun experience and it’s far from over, and I thank you for checking in on me, I am humbled. But I’ve spent enough time roaming around the Wilford Hall Medical Center on Lackland Air Force Base to know I’m in pretty good shape compared to many others also roaming the halls of that hospital. Many are retired veterans and some recovering wounded, young airmen having just entered the Air Force going to sick call for the first time, that uncounted number of devoted dependants that followed (or are following) their spouses around the world and one hell of a dedicated group of medical professionals bent on getting us all through our medical misfortunes. It makes me feel a bit insignificant, and yet, proud to be a member of that rabble.
Check back next week.
Miller, out
Well, I was a little busy this weekend, I ventured out twice with Terry. Saturday, we went out to run a few errands and make a pilgrimage to Sam’s Club (it’s not the weekend unless we visit Sam’s). On Sunday we went on a shopping expedition for a Black & Decker battery operated, hand held leaf blower. That took 3 stores. We also visited the local nursery to replenish a few plants and to get some herbs.
So, that doesn’t sound like much, but it took a lot out of me and instead of blogging, I took a nap.
Back to the adventure . . .
Terry returned from Green Bay on Monday (an uneventful return trip), the beasties and I were happy to see her and listen to her stories of the grand birthday celebration for her mother.
I made further progress weaning myself off the dreaded narcotic Percocet and actually managed 2 days where I didn’t take any Percs. Notice I only said 2 days. I don’t know if it’s the nature of the healing process or I was operating on residual pain killer, but those two days were relatively pain free, then the pain level went up and I resorted to a modest application of pain relief from Percocet again. I’m down to 1 or 2 a day now with the addition of Tylenol or Ibuprofen. (I’ve got 30 Percocet left, and Dr. Akins didn’t sound like he was inclined to extend my prescription past that remaining amount.)
I’ve visited with all three of my doctors this week and they all seem pleased with my on going recovery, I on the other hand am unimpressed. I expected a much quicker recovery, but it doesn’t seem to be in the cards. I have been gauging my treatment and recovery on how the outside of my neck has reacted to the radiation treatment. The first 10 days or so of my treatment I couldn’t tell much was going on. As time went on my neck began to display signs of the radiation burn and it reached it’s height about 5 – 10 days after my last treatment. I had a serious looking sun burn on my neck. Check out the earlier posted pictures. I could tell by what was going on on the outside of my neck serious things were going on inside my throat. The pain in my throat increased with the obvious damage going on outside on my neck. Once the treatment was over and my neck started to show signs of healing, I figured the same healing was going on in my throat. Nope, not so much.
I can’t explain what’s going on in my throat. One day the upper part of my throat will be sore, the next day the lower part of my throat will be sore, some days my tongue is very sensitive and some days I think I’m making good progress. The next day I’m reaching for the Percocet. And of course I’m fed up and frustrated with the amount of slimy thick mucus saliva. I could stand at the sink and gargle 24 hours a day and still never clear all that crap out of my throat. The doctors tell me it should clear up in a few weeks, or it could hang on for a few months, or maybe never fully clear up. I love it when they are so precise.
Two items of note: One, I returned to the gym today. It’s been about 4 weeks since I last went, mainly due to the radiation burn on my neck. I have lost a lot of weight and my energy level is way down and I know the only way to take care of that is to get back in the gym and start eating better. Which brings me to two; I’ve started eating one meal a day of regular solid food. My sense of taste is returning, ever so slightly, but returning. If I medicate just right and accept a level of serious discomfort I’m able to finish a modest amount of a regular sized meal. On Saturday I made Salmon and grilled vegetables, on Sunday I grilled steak and potatoes and added some of the grilled vegetables left from Saturday. Monday evening we ate left-over’s from Saturday and Sunday. I must say it tasted fine (thanks to the chef), and I did manage to eat about a ladies portion of each meal. But, it was torture. I did not enjoy any of those three meals.
It marks a step forward. I’m not sure why I decided to try solid food, other than I am thoroughly fed up with the pureed gruel I’ve been subsisting on for the last 4 weeks. Maybe somewhere in the back of my mind I’m thinking if I act like everything is normal again then maybe my recovery will accelerate and match my actions. Will my mouth to get better. We’ll see.
Dr. Eller, the doctor that diagnosed my cancer, has taken over my recovery and future treatment. I saw him for the first time since January, when we were deciding what my treatment should be. Both Doctors Richard and Akins will not see me again for 2 – 3 months, to follow-up on my chemo/radiation side effects. So they have pretty much turned me back over to Dr. Eller. When I saw him last Friday, he did a very thorough examination and scoped my throat. There was no sign of the tumor on my tongue (woo, hooo !!!!) He is cautiously optimistic things are going well. We plan on scheduling a full body PET scan sometime in late June or early July to search for any other occurrences of cancer. He did reiterate my prognosis is good and if the PET scan comes back negative, I’ve got a very good chance of spending a good number of years enjoying a healthy long life. (this is where everyone crosses their fingers)
I plan on returning to work this week, probably on Wednesday. I figure half days at first, then we’ll see how it goes next week. I hope to make it as easy on my co-workers as possible. I’ll try and not fall asleep at my desk, I will not put anything in my feeding tube while at my desk, and I’ll try and keep the spitting to a minimum. (maybe I’ll borrow one of Stu’s spit canteens)
Let me close by going back to the first paragraph. This hasn’t been a fun experience and it’s far from over, and I thank you for checking in on me, I am humbled. But I’ve spent enough time roaming around the Wilford Hall Medical Center on Lackland Air Force Base to know I’m in pretty good shape compared to many others also roaming the halls of that hospital. Many are retired veterans and some recovering wounded, young airmen having just entered the Air Force going to sick call for the first time, that uncounted number of devoted dependants that followed (or are following) their spouses around the world and one hell of a dedicated group of medical professionals bent on getting us all through our medical misfortunes. It makes me feel a bit insignificant, and yet, proud to be a member of that rabble.
Check back next week.
Miller, out
Sunday, April 11, 2010
Progress? Maybe some.
My feet hurt. I know most of you just check in to see what my current status is and hope I will report some improvement. I do know there is one Dutch guy out there that just checks in to see what new plague has befallen me. It did seem that for a number of weeks something new and painful was dropping in to say hello on a regular basis.
The last time I spoke with Dr. Richard we discussed whether I really needed the last chemo treatment. We decided to go ahead and do it. I figured my body had gotten used to it, we hadn’t seen any new side effects, so what could it hurt. Well, my feet hurt. I can’t logically connect it with the radiation treatment (but I’m just the patient), so I’m thinking it’s the Erbitux, chemo treatment. One of the listed side effects of Erbitux is drying and cracking of the skin around the thumbs and finger nails, this also applies to the big toes. Where is my pain you ask? If you were lying on the floor on your back the area between 5 o’clock and 8 o’clock on the outside portion of your heel (that portion that would be touching whatever it is you’re lying on), it also radiates in towards the ball of the heel itself. This portion of the heel is fairly well calloused. It’s not an uncomfortable pain, just noticeable. It just makes me think, what next?
Not much to report this week. I haven’t noticed any real changes for the better except the left side of my neck where the radiation burn is seems to be getting better. The right side still has some very tender areas. I can also see a difference in color where the skin has healed versus the tender skin. My main job is to keep the area clean and moist.
On Tuesday I saw Dr. Akins and the nurses. We had a long discussion concerning my pain medication. We both agreed that I was still in need, but that I should start to back off as soon as I am able. I started cutting back on Thursday and I will only take 5 Percocet today (Sunday). I think by the end of next week I should be able to limit the Percocet to just meal time and go back to Tylenol for pain management. I told him we had decided that I wouldn’t travel to Green Bay, that it just wouldn’t be smart at this time. Too many medications, still eating through the feeding tube etc., he agreed, that was probably smart. Little did we know it was probably a great decision.
On Wednesday Terry left the house at approx 8:15am and traveled to Green Bay via Dallas, TX and Chicago. Her plane was delayed landing in Dallas and she then missed 3 following flights to Chicago. Once in Chicago she was delayed again and didn’t arrive at her mother’s house until around 9:00pm. That would have been devastating for me had I traveled with her. I wouldn’t have been able to eat, and I would have had real problems taking my pain medication. Although I really wanted to be at her mother’s 95th birthday party, we sure made the right decision.
On the brighter side, I did get to spend some quality couch time this weekend watching the Master’s golf tournament. On the down side, the dogs didn’t get breakfast until I got up. Normally, Terry feeds them around 4:30am during the week and around 6:00am on the weekends. They have her trained real good. They don’t bug me in the morning, they know I’m not getting up until I’m ready.
So, while I didn’t see much healing progress this week, I did manage to reduce the pain medication. I see doctors Richard and Eller later next week, hopefully I’ll have something good to report.
Cheers,
Miller, out
The last time I spoke with Dr. Richard we discussed whether I really needed the last chemo treatment. We decided to go ahead and do it. I figured my body had gotten used to it, we hadn’t seen any new side effects, so what could it hurt. Well, my feet hurt. I can’t logically connect it with the radiation treatment (but I’m just the patient), so I’m thinking it’s the Erbitux, chemo treatment. One of the listed side effects of Erbitux is drying and cracking of the skin around the thumbs and finger nails, this also applies to the big toes. Where is my pain you ask? If you were lying on the floor on your back the area between 5 o’clock and 8 o’clock on the outside portion of your heel (that portion that would be touching whatever it is you’re lying on), it also radiates in towards the ball of the heel itself. This portion of the heel is fairly well calloused. It’s not an uncomfortable pain, just noticeable. It just makes me think, what next?
Not much to report this week. I haven’t noticed any real changes for the better except the left side of my neck where the radiation burn is seems to be getting better. The right side still has some very tender areas. I can also see a difference in color where the skin has healed versus the tender skin. My main job is to keep the area clean and moist.
On Tuesday I saw Dr. Akins and the nurses. We had a long discussion concerning my pain medication. We both agreed that I was still in need, but that I should start to back off as soon as I am able. I started cutting back on Thursday and I will only take 5 Percocet today (Sunday). I think by the end of next week I should be able to limit the Percocet to just meal time and go back to Tylenol for pain management. I told him we had decided that I wouldn’t travel to Green Bay, that it just wouldn’t be smart at this time. Too many medications, still eating through the feeding tube etc., he agreed, that was probably smart. Little did we know it was probably a great decision.
On Wednesday Terry left the house at approx 8:15am and traveled to Green Bay via Dallas, TX and Chicago. Her plane was delayed landing in Dallas and she then missed 3 following flights to Chicago. Once in Chicago she was delayed again and didn’t arrive at her mother’s house until around 9:00pm. That would have been devastating for me had I traveled with her. I wouldn’t have been able to eat, and I would have had real problems taking my pain medication. Although I really wanted to be at her mother’s 95th birthday party, we sure made the right decision.
On the brighter side, I did get to spend some quality couch time this weekend watching the Master’s golf tournament. On the down side, the dogs didn’t get breakfast until I got up. Normally, Terry feeds them around 4:30am during the week and around 6:00am on the weekends. They have her trained real good. They don’t bug me in the morning, they know I’m not getting up until I’m ready.
So, while I didn’t see much healing progress this week, I did manage to reduce the pain medication. I see doctors Richard and Eller later next week, hopefully I’ll have something good to report.
Cheers,
Miller, out
Sunday, April 4, 2010
Treatment Complete !
Monday and Tuesday went well. Nothing new to say about the treatment except, I’m glad it’s over. Terry and I went out last week end and got a couple of baskets and filled them with munchies (cookies, crackers, sports bars, chips, chocolate etc.) and sports type drinks. I presented them to the nurses and technicians at both the chemo and radiation clinics. They were all great to me during the treatments and while the doctors get all the credit for the diagnostics and treatment development and stuff, it’s the nurses and techies that actually perform the treatments and have to deal with the patients on a daily basis. They are the life savers and deserve more credit.
I have follow-up appointments set up with everyone in a couple of weeks.
I guess you’d think this is time for celebration and rejoice, but I don’t feel any better. While the actual treatments are over, I’ve got to keep in mind that the “treatment” is all cumulative and so the chemo and radiation are still working their thing for another 10 – 14 days. I’m pretty much just in maintenance mode right now. Once I see improvement in my condition, lower pain medication, ability to eat and swallow, lessening of the mucus slimy saliva, then I guess I will celebrate. I have become my PEG. If I’m not using it to take in medication, I’m using it to take in nutrition or hydration. It seems like every couple of hours I’m hooking up for one reason or another. I also sleep a lot. I only sleep in one hour blocks of time, so I’m not sure it’s very restful, but it does pass the time.
Here’s a picture of me all slathered up.
I slather-up three times a day. I don’t see where it has improved anything, but it keeps the area of radiation burn moisturized and that in itself relives pain. Without the moisturizer, the affected area would dry up, crack and all sorts of nasty stuff would happen. Not to mention it would hurt like hell.
Because I’m not going in to work I haven’t been able to catch up with John Winegardner, co-worker extraordinaire. He mailed a great card from the NEDBAG members, a great book from the Spanish delegation and some Guinness paraphernalia (I can only guess from who). I’ve also received some great cards and emails from friends, family and co-workers. I’ve tried to keep up with thank you emails to everyone, but I’ve probably missed a few. Believe me; I am very touched by your personal comments and support. I’ve never been a touchy – feely, wear my emotion on my sleeve kind of guy. I’ve heard stoic a few times in the past. I believe this bout with cancer qualifies as a life event. At least that’s what one of my former insurance companies would classify it. It has changed me physically and psychologically, emotionally, all for the better I hope.
Prior to this event I had been looking out 30 or 40 years into the future, I don’t think I can do that anymore. That’s a hard one to get my head around right now. What time frames do I use? 1, 3, 5, 10, 25 years, or should I even worry about it at all? I’m not a live for the moment kind of guy and I don’t see that changing.
However, before this goes down some dark rabbit hole, I believe I would need a couple of cool Guinness and that ain’t happening for a while, so I’ll leave it at that.
Cheers, y’all!
I have follow-up appointments set up with everyone in a couple of weeks.
I guess you’d think this is time for celebration and rejoice, but I don’t feel any better. While the actual treatments are over, I’ve got to keep in mind that the “treatment” is all cumulative and so the chemo and radiation are still working their thing for another 10 – 14 days. I’m pretty much just in maintenance mode right now. Once I see improvement in my condition, lower pain medication, ability to eat and swallow, lessening of the mucus slimy saliva, then I guess I will celebrate. I have become my PEG. If I’m not using it to take in medication, I’m using it to take in nutrition or hydration. It seems like every couple of hours I’m hooking up for one reason or another. I also sleep a lot. I only sleep in one hour blocks of time, so I’m not sure it’s very restful, but it does pass the time.
Here’s a picture of me all slathered up.
I slather-up three times a day. I don’t see where it has improved anything, but it keeps the area of radiation burn moisturized and that in itself relives pain. Without the moisturizer, the affected area would dry up, crack and all sorts of nasty stuff would happen. Not to mention it would hurt like hell.
Because I’m not going in to work I haven’t been able to catch up with John Winegardner, co-worker extraordinaire. He mailed a great card from the NEDBAG members, a great book from the Spanish delegation and some Guinness paraphernalia (I can only guess from who). I’ve also received some great cards and emails from friends, family and co-workers. I’ve tried to keep up with thank you emails to everyone, but I’ve probably missed a few. Believe me; I am very touched by your personal comments and support. I’ve never been a touchy – feely, wear my emotion on my sleeve kind of guy. I’ve heard stoic a few times in the past. I believe this bout with cancer qualifies as a life event. At least that’s what one of my former insurance companies would classify it. It has changed me physically and psychologically, emotionally, all for the better I hope.
Prior to this event I had been looking out 30 or 40 years into the future, I don’t think I can do that anymore. That’s a hard one to get my head around right now. What time frames do I use? 1, 3, 5, 10, 25 years, or should I even worry about it at all? I’m not a live for the moment kind of guy and I don’t see that changing.
However, before this goes down some dark rabbit hole, I believe I would need a couple of cool Guinness and that ain’t happening for a while, so I’ll leave it at that.
Cheers, y’all!
Sunday, March 28, 2010
I hope that light I see at the end of the tunnel isn’t a train . . . .
28 March 2010
Terry has started driving me to the hospital for my daily treatments. She says I’m taking too many pain killers to drive. (I respectively disagree) (but she still drives).
The new radiation treatment has resulted in a sore throat more down towards my chest and what seems to be a serious sun burn around my neck. We did raise my pain meds, but stayed with Percocet. I now take 8 pills a day (2 every 6 hours). I’m never totally pain free. I’ve gotten real good at crushing pills.
Tuesday was a full day. I missed an appointment with my chemo Doctor on Monday morning. I called and apologized and they set me up with a walk-in appointment on Tuesday, because I was going to be there for my regular chemo treatment. I showed up at my regular 7:30am and the doctor was waiting for me. We had a very good discussion about my case, how treatment was going, how I was feeling, the usual stuff.
Dr. Richard has taken a real interest in my case and asks a lot of questions. We talked about our decision to have the PEG (feeding tube) installed prior to treatment and we both agreed it was one of the best decisions ever made. I can’t even think how uncomfortable I would be if I didn’t have the PEG. I’m sure I would have been admitted to the hospital for lack of nutrition and hydration by now. He keeps telling me I’m doing better than expected, due to my age and physical condition. I’m probably 20 – 30 years younger than most of his patients.
He sent me on my way and I checked in with the staff at the chemo clinic, they drew labs and set me up for the days treatment. About half way through the treatment Dr, Richard came in with a copy of my lab results and was concerned that my potassium level was low. Potassium is both an electrolyte and a mineral. It helps keep the water (the amount of fluid inside and outside the body's cells) and electrolyte balance of the body. Potassium is also important in how nerves and muscles work. Potassium levels can be affected by how the kidneys are working, the blood pH, the amount of potassium you eat, the hormone levels in your body, severe vomiting, and taking certain medicines. (WebMD) So, he prescribed a dose of potassium and a prescription for me to take home and administer during the coming week. Just my luck the dose of potassium he prescribed was going to take 4 hours via IV. We finished up my regular chemo treatment and I trundled off to the dungeon for a radiation treatment. Once that was finished, it was back up to chemo to be hooked up to the potassium bag.
Earlier in the day the plan was for Terry to drop me off at the hospital and for my niece to pick me up at approx 1:30pm and take me home. Well this low potassium thing threw a wrench in the works for that schedule. I called Lissa, my niece, and told her I was going to be late and that I would contact Terry and we would work out a solution to picking me up later in the day. It all worked out ok, Terry had a late meeting and didn’t finish up until after 4 o’clock. She came and picked me up on her way home from work. Needless to say, none of this would have been an issue if they had let me drive.
On Wednesday Terry drove me to my radiation appointment. She had never seen what goes on during a treatment. I brought along my camera to document the event. The below pictures are of me and the treatment mask that attaches me to the treatment table
my dislike of the tongue depressor thingy, (you can also see some of the radiation burn) 
and me lying on the treatment table.,
None of the pictures are very good, but they give you an idea what the treatment is like. That large disk above my head in the last picture rotates around my head stopping at specific points and dispenses a timed dose of radiation. It takes about five minutes per treatment.
On Wednesday I also met with Dr. Atkins after my radiation treatment and we discussed raising my pain medication. We decided to keep me on the 8 pills a day, because I only had 3 treatments left. If I could manage on that level of pain relief for another week or so, my pain relief requirement should start to drop the farther I got a way from my last treatment. I run out of pills on Monday the 29th, we’ll discuss it again.
He turned me over to his nurses to get my vital signs and weight and to dispense some more moisturizer. Being as Terry was with me, they ganged up on me and decided I wasn’t putting enough moisturizer on and they would show me how it’s done. The nurse took out a new glove and a new tube of super duper moisturizer and proceeded to slather me up real good. By the time she was done, from my chin down to my collar bone and completely around my neck, it looked like I was covered in mayonnaise or lard (you choose). They both agreed that was the way it should be done. I was not impressed. I have agreed to slather up real good in the future. I won’t leave the house looking like that, but when I’m at home and just prior to going to bed I do slather up.
They also decided I wasn’t taking in enough nutrition. I needed to up the amount of protein supplements (boost, ensure, protein drinks etc.) or I was going to loose too much weight. The nurse gave me a case of boost plus. I now drink at least 3 of those a day and an 8 oz portion of the vegetable/sports drink stuff. It smells like Hawaiian Punch and V8 juice combined. Argh! I also eat some kind of breakfast and usually a bowl of soup for dinner.
That was Wednesday, I was starting to feel pretty good. Treatments were almost over; pain seemed to be under control. I had enough moisturizer to last any one man a life time or two. Maybe I was going to get through this ok.
Thursday – maybe not so much. I woke up with a serious sore throat, thick stringy mucous flowing like that nasty beast from Aliens, and a very tender neck. It got better as the day went on and Friday was somewhat better. Fridays always call for celebration, end of the week, two day break, only 2 more treatments to go.
Sunday, Terry has been nursing a sore shoulder all weekend. She has somehow aggravated an old injury and she trundled herself off to the emergency room at the break of dawn. She woke me up and through both of our pain, we managed to agree she needed to go to the emergency room. Some hours later, she woke me up again and explained her situation. Old injury, lots of pain, lots of pain killers, take it easy on the couch all day. What a pair we make.
I won’t discuss food this week, needless to say meal time sucks. I will get better, eating will become a pleasure. SOOOOON !!!!!!
Next weeks report will be better.
Terry has started driving me to the hospital for my daily treatments. She says I’m taking too many pain killers to drive. (I respectively disagree) (but she still drives).
The new radiation treatment has resulted in a sore throat more down towards my chest and what seems to be a serious sun burn around my neck. We did raise my pain meds, but stayed with Percocet. I now take 8 pills a day (2 every 6 hours). I’m never totally pain free. I’ve gotten real good at crushing pills.
Tuesday was a full day. I missed an appointment with my chemo Doctor on Monday morning. I called and apologized and they set me up with a walk-in appointment on Tuesday, because I was going to be there for my regular chemo treatment. I showed up at my regular 7:30am and the doctor was waiting for me. We had a very good discussion about my case, how treatment was going, how I was feeling, the usual stuff.
Dr. Richard has taken a real interest in my case and asks a lot of questions. We talked about our decision to have the PEG (feeding tube) installed prior to treatment and we both agreed it was one of the best decisions ever made. I can’t even think how uncomfortable I would be if I didn’t have the PEG. I’m sure I would have been admitted to the hospital for lack of nutrition and hydration by now. He keeps telling me I’m doing better than expected, due to my age and physical condition. I’m probably 20 – 30 years younger than most of his patients.
He sent me on my way and I checked in with the staff at the chemo clinic, they drew labs and set me up for the days treatment. About half way through the treatment Dr, Richard came in with a copy of my lab results and was concerned that my potassium level was low. Potassium is both an electrolyte and a mineral. It helps keep the water (the amount of fluid inside and outside the body's cells) and electrolyte balance of the body. Potassium is also important in how nerves and muscles work. Potassium levels can be affected by how the kidneys are working, the blood pH, the amount of potassium you eat, the hormone levels in your body, severe vomiting, and taking certain medicines. (WebMD) So, he prescribed a dose of potassium and a prescription for me to take home and administer during the coming week. Just my luck the dose of potassium he prescribed was going to take 4 hours via IV. We finished up my regular chemo treatment and I trundled off to the dungeon for a radiation treatment. Once that was finished, it was back up to chemo to be hooked up to the potassium bag.
Earlier in the day the plan was for Terry to drop me off at the hospital and for my niece to pick me up at approx 1:30pm and take me home. Well this low potassium thing threw a wrench in the works for that schedule. I called Lissa, my niece, and told her I was going to be late and that I would contact Terry and we would work out a solution to picking me up later in the day. It all worked out ok, Terry had a late meeting and didn’t finish up until after 4 o’clock. She came and picked me up on her way home from work. Needless to say, none of this would have been an issue if they had let me drive.
On Wednesday Terry drove me to my radiation appointment. She had never seen what goes on during a treatment. I brought along my camera to document the event. The below pictures are of me and the treatment mask that attaches me to the treatment table
my dislike of the tongue depressor thingy, (you can also see some of the radiation burn) 
and me lying on the treatment table.,
None of the pictures are very good, but they give you an idea what the treatment is like. That large disk above my head in the last picture rotates around my head stopping at specific points and dispenses a timed dose of radiation. It takes about five minutes per treatment.On Wednesday I also met with Dr. Atkins after my radiation treatment and we discussed raising my pain medication. We decided to keep me on the 8 pills a day, because I only had 3 treatments left. If I could manage on that level of pain relief for another week or so, my pain relief requirement should start to drop the farther I got a way from my last treatment. I run out of pills on Monday the 29th, we’ll discuss it again.
He turned me over to his nurses to get my vital signs and weight and to dispense some more moisturizer. Being as Terry was with me, they ganged up on me and decided I wasn’t putting enough moisturizer on and they would show me how it’s done. The nurse took out a new glove and a new tube of super duper moisturizer and proceeded to slather me up real good. By the time she was done, from my chin down to my collar bone and completely around my neck, it looked like I was covered in mayonnaise or lard (you choose). They both agreed that was the way it should be done. I was not impressed. I have agreed to slather up real good in the future. I won’t leave the house looking like that, but when I’m at home and just prior to going to bed I do slather up.
They also decided I wasn’t taking in enough nutrition. I needed to up the amount of protein supplements (boost, ensure, protein drinks etc.) or I was going to loose too much weight. The nurse gave me a case of boost plus. I now drink at least 3 of those a day and an 8 oz portion of the vegetable/sports drink stuff. It smells like Hawaiian Punch and V8 juice combined. Argh! I also eat some kind of breakfast and usually a bowl of soup for dinner.
That was Wednesday, I was starting to feel pretty good. Treatments were almost over; pain seemed to be under control. I had enough moisturizer to last any one man a life time or two. Maybe I was going to get through this ok.
Thursday – maybe not so much. I woke up with a serious sore throat, thick stringy mucous flowing like that nasty beast from Aliens, and a very tender neck. It got better as the day went on and Friday was somewhat better. Fridays always call for celebration, end of the week, two day break, only 2 more treatments to go.
Sunday, Terry has been nursing a sore shoulder all weekend. She has somehow aggravated an old injury and she trundled herself off to the emergency room at the break of dawn. She woke me up and through both of our pain, we managed to agree she needed to go to the emergency room. Some hours later, she woke me up again and explained her situation. Old injury, lots of pain, lots of pain killers, take it easy on the couch all day. What a pair we make.
I won’t discuss food this week, needless to say meal time sucks. I will get better, eating will become a pleasure. SOOOOON !!!!!!
Next weeks report will be better.
Sunday, March 21, 2010
Just another week . . .
St. Patrick’s Day was my last day at work until I decide to go back. I figured I wasn’t keeping up on my mouth and throat maintenance as well as I could and I’ve pretty much given up on solid food. This makes eating at work a bit messy. I’ll also rely on my PEG for almost all of my hydration now. So, rather then put my co-workers through all the mess and probably gross happenings at my desk or in the rest room, I figured it was better to take it home.
I’ve got a lap top from work, so I will be able to keep up with my email. That doesn’t mean I’ll get much work done, but I will get the 20 admin notes a day that clutter up everyone’s in box.
Chemo treatment went well on Tuesday and on Wednesday we changed up my radiation treatment to reach down lower below my neck proper. I didn’t notice until this weekend that they are also radiating the back of my neck. I’ll have to ask them about that on Monday. We also changed my radiation appointment time from 9 o’clock to 1 o’clock in the afternoon. The traffic is much better at noon than at 8 o’clock in the morning. I get to sleep in and leisurely take care of business in the morning. The routine seems to get longer every day.
We discussed raising my pain meds in the near future. Dr. Akins mentioned putting me on a patch. That’s something new for him, so I’ll be a guinea pig for him. I have to crush 325 mg Percocet and use the PEG to keep up with what I need now. It will be nice to have a steady amount of pain killer, versus taking a dose every 4 hours.
Except for Cream of Wheat breakfast cereal and Oatmeal, both of which I add a liberal amount of warm milk to make it about as liquid as possible, I am on a liquid diet. If it has to be chewed, it isn’t going in my mouth.
Last week’s mass emailing resulted in some great comments and personal emails from y’all. They came at a great time and I will reply individually rather than an open comment to the blog page. I figure if y’all are taking the time to read this and make a comment, the least I can do is acknowledge your time and effort.
I tried to convince Terry on St. Patrick’s Day to take a picture of me with one of my Guinness tukes along with a full syringe of Guinness ready for input to my PEG. Needless to say she wasn’t very encouraging and shut down the conversation quickly. She doesn’t realize this just gives me more reason to stick around until next March 17th and have another one of the many silly St. Patrick’s Day pictures taken. Wives just don’t know to what extent they can provide encouragement to their husbands.
Oh yeah, it was down in the low 30’s (F) this morning. We spent a few minutes late yesterday afternoon bringing in plants to the garage and covering what we couldn’t bring in. Plant nurseries will do a bang up job again next weekend. We never learn.
Major disappointment for me next week. If I wasn’t undergoing treatment I would be attending the 64th NEDBAG meeting at the Edelweiss Lodge and Resort in Garmisch Germany. I believe that would have been my 41st NEDBAG meeting. It also happens to be the last meeting for my other US delegates, CAPT (sel) Stu Baker, USN, who will be moving on to a new assignment in April and MSgt John Winegardner, USAF, who will be retiring in June. I will miss them both and regret not being able to give them a good send off. Both gentlemen are dedicated hard workers that will not be replaced easily.
I hadn’t minded the diagnosis, treatment decision and finally the actual treatment timeframe until now. Up to this point it has been taking place during our winter/holiday doldrums, but next week starts our annual schedule of meetings that run until November. I hope I’m back in the saddle again soon.
Sunday, March 14, 2010
In a word YES!!!!!!
Every thing was pretty much normal until Thursday morning, I woke up with a splitting headache (bordering on a migraine) and my throat was sore and clogged with thick saliva. My intention was to get up gargle and take a sinus Tylenol. By the time I had cleared my throat it felt like it was on fire and I was able to spit out some blood. I went to the kitchen to get the Tylenol, but figured I needed to take a few sips of water to lube up the throat and prepare for the pills. I couldn’t swallow the water.
The day before I saw my radiation doctor and he did his usual weekly status check-up. I told him my mouth and throat was getting a little worse than the week before. He asked me on a range of 1 – 10 what was my pain level, I told him when I’m medicated about a 3 – 4. As long as I don’t have anything in my mouth or swallow much it doesn’t seem to bother me too much. He looked at my mouth and throat and said, he thought I was being modest in my evaluation of the pain. He told me not to take any more Tylenol than I had been taking and to start taking Percocet if I needed it. If the pain got any worse he could prescribe something stronger. I told him I’d let him know when I was ready for an upgrade. He also prescribed something called Tri-mix (lidocain, Maalox, Benadryl). I’m supposed to swish it around my mouth and gargle with it 20 minutes prior to eating. It coats the mouth/throat and deadens everything.
Back to Thursday morning. Seeing as I couldn’t even swallow water, I decided to try the tri-mix. It did the trick. But it tastes terrible (wild cherry cough syrup flavor – ugh !!!) and it initially burns the tender sore spots in the mouth/throat until the lidocain takes effect. I was able to down a couple sinus Tylenol and headed back to bed. I was due at my radiation treatment at 9:00am, so I decided to let the medication take effect and just go straight to the appointment instead of going into work for 2 hours. I got out of bed at 6:45 and went through my usual daily routine. I felt about 90% better, but was glad I decided to stay in bed rather then going to work.
The treatment went well and I visited with the nurses, they said my blood pressure was a bit high on Wednesday and wanted to check me a couple of days in a row. It was a bit high, but not in the “we need to do something about it range.” They also gave me some more moisturizer. They gave me the standard version, a super version and a super duper version. The super version is the standard version with lard added. Ok, maybe not lard, but whatever they added it’s thick and greasier then the standard version. My jaw and chin now need the super version. The super duper version has lidocain in it for when my skin gets very tender. (oh boy) Standing buck-ass naked in front of the mirror (yea, a sight I’m not even proud of) it looks like I’ve got a farmer sun tan. My face and neck are red and somewhat tanned down. The rest is lily pale white, except for my face, I almost look British.
Let’s talk food. (a little lemon on that paper cut?) I made some soup this week. I figured I’d puree it figuring that would make it easier to swallow. It worked, trouble is I have no idea what it tasted like. Terry said it was good. I guess she wasn’t lying because she didn’t spit it out and actually had a second helping. It’s to the point where I can’t eat anything lumpy at all. Some slimy vegetables go down ok, but they have to be cooked down pretty well. Anything that has to be chewed is out. You have no idea how depressing meal time has become. There is a section in our Sunday paper called “Taste,” it’s all about food, nutrition, recipes, and restaurants in the local area. I’ve started cutting out articles about restaurants I want to visit when this is all over. I’m afraid how thick that stack of articles will be by the time I get around to start visiting them.
I went to the gym twice this week (Monday and Thursday). Tuesdays are out due to the double treatment that day and it seems I’ve always got something else to do on Wednesday. By Friday I’m so happy the week is over and I’m getting a 2 day break I fart it off and just don’t go. I do feel it helps. I do feel a little tired some days, but I don’t feel weak. I don’t do a heavy weight training workout, just something I call a maintenance workout and I spend 45 minutes doing some sort of aerobics. It keeps my energy level up and connected to the old routine. I’ve lost about 15 lbs since December, that’s 15 lbs I can afford to lose. From here on out I need to watch my calorie intake and keep it up so I don’t loose much more.
I had intentions of staying in bed late Saturday morning, but my throat finally got to the point where I just couldn’t stay there without some medication. The pain wasn’t as bad as Thursday, but I knew the routine and hit the tri-mix before anything else. By the time I was medicated I was wide awake and it didn’t make sense to go back to bed, so I gathered up the Friday and Saturday morning papers and a cup of luke-warm coffee and veg’d at the kitchen table for a few hours. While I’ve cut down to about 3 – 4 cups of coffee a day, I’m surprised I can still drink it. I can actually somewhat taste it and the warm liquid sooths the throat somewhat, it also seems to cut the thick saliva to some extent. I mean a guy can only take so much, no sensation of taste, no chewing a thick juicy steak, no beer !!!!! At least I still have coffee. You know of course next week I’ll tell you it probably makes me throw up.
Sunday pretty much sucked (must have been that daylight savings time thingy). I got up around 7:00am tried to rinse out my mouth and throat and take some medication. I managed that, made a pot of coffee and went back to bed. Back up around 9:00am, made another attempt at rinsing out my mouth and settled in with the Sunday paper. Terry made me a bowl of malt-o-meal and I managed to get that down along with ½ cup of coffee. I finally got cleaned up and poured a pint of water into my PEG, I can’t drink more than a couple of sips of water at a time now, so I’m going to have to rely on the PEG for my mass hydration intake.
We visited a nursery this afternoon, the temperature has reached the low 80’s this week so all the flowers, grass, vegetables and whatever are ready to be planted (and then wiped out in a late spring freeze). By the time we got home I was beat. I managed some lunch and then slunk off for a 2hr nap. Terry planted flowers.
With 3 weeks of treatments left and 3 – 4 weeks of residual treatment effects after that, I can’t imagine what I’m going to have to deal with. I’m thinking the feeding tube was a good idea. I used it Friday to put in about a liter of water, I wasn’t able to drink as vigorously as I’ve been able to over the last few weeks. It’s important I keep hydrated and if that’s the only way, I have no problem using it.
I’m taking it a day at a time now making a decision on when my last work day will be. I’m talking as little as possible; I spend a lot of time caring to my mouth and throat. I can’t see subjecting my co-workers to my gargling and spitting, I’d spend more time in the men’s room than at my desk. So I’m thinking sometime this week I will pack it in and give up the day job. I can bring my work laptop home and keep in contact with it, maybe get a little work done. The idea of sitting around the house just doesn’t sit well with me. Sure, I’ve got the daily medical appointments to take care of, but that’s only a few hours a day. I guess it’s time to refocus from work to healing. It won’t be easy.
Ok, enough wimpering for one week. I’m not sure what new woes I’ll have for you next week, maybe the frogs will make an appearance.
The day before I saw my radiation doctor and he did his usual weekly status check-up. I told him my mouth and throat was getting a little worse than the week before. He asked me on a range of 1 – 10 what was my pain level, I told him when I’m medicated about a 3 – 4. As long as I don’t have anything in my mouth or swallow much it doesn’t seem to bother me too much. He looked at my mouth and throat and said, he thought I was being modest in my evaluation of the pain. He told me not to take any more Tylenol than I had been taking and to start taking Percocet if I needed it. If the pain got any worse he could prescribe something stronger. I told him I’d let him know when I was ready for an upgrade. He also prescribed something called Tri-mix (lidocain, Maalox, Benadryl). I’m supposed to swish it around my mouth and gargle with it 20 minutes prior to eating. It coats the mouth/throat and deadens everything.
Back to Thursday morning. Seeing as I couldn’t even swallow water, I decided to try the tri-mix. It did the trick. But it tastes terrible (wild cherry cough syrup flavor – ugh !!!) and it initially burns the tender sore spots in the mouth/throat until the lidocain takes effect. I was able to down a couple sinus Tylenol and headed back to bed. I was due at my radiation treatment at 9:00am, so I decided to let the medication take effect and just go straight to the appointment instead of going into work for 2 hours. I got out of bed at 6:45 and went through my usual daily routine. I felt about 90% better, but was glad I decided to stay in bed rather then going to work.
The treatment went well and I visited with the nurses, they said my blood pressure was a bit high on Wednesday and wanted to check me a couple of days in a row. It was a bit high, but not in the “we need to do something about it range.” They also gave me some more moisturizer. They gave me the standard version, a super version and a super duper version. The super version is the standard version with lard added. Ok, maybe not lard, but whatever they added it’s thick and greasier then the standard version. My jaw and chin now need the super version. The super duper version has lidocain in it for when my skin gets very tender. (oh boy) Standing buck-ass naked in front of the mirror (yea, a sight I’m not even proud of) it looks like I’ve got a farmer sun tan. My face and neck are red and somewhat tanned down. The rest is lily pale white, except for my face, I almost look British.
Let’s talk food. (a little lemon on that paper cut?) I made some soup this week. I figured I’d puree it figuring that would make it easier to swallow. It worked, trouble is I have no idea what it tasted like. Terry said it was good. I guess she wasn’t lying because she didn’t spit it out and actually had a second helping. It’s to the point where I can’t eat anything lumpy at all. Some slimy vegetables go down ok, but they have to be cooked down pretty well. Anything that has to be chewed is out. You have no idea how depressing meal time has become. There is a section in our Sunday paper called “Taste,” it’s all about food, nutrition, recipes, and restaurants in the local area. I’ve started cutting out articles about restaurants I want to visit when this is all over. I’m afraid how thick that stack of articles will be by the time I get around to start visiting them.
I went to the gym twice this week (Monday and Thursday). Tuesdays are out due to the double treatment that day and it seems I’ve always got something else to do on Wednesday. By Friday I’m so happy the week is over and I’m getting a 2 day break I fart it off and just don’t go. I do feel it helps. I do feel a little tired some days, but I don’t feel weak. I don’t do a heavy weight training workout, just something I call a maintenance workout and I spend 45 minutes doing some sort of aerobics. It keeps my energy level up and connected to the old routine. I’ve lost about 15 lbs since December, that’s 15 lbs I can afford to lose. From here on out I need to watch my calorie intake and keep it up so I don’t loose much more.
I had intentions of staying in bed late Saturday morning, but my throat finally got to the point where I just couldn’t stay there without some medication. The pain wasn’t as bad as Thursday, but I knew the routine and hit the tri-mix before anything else. By the time I was medicated I was wide awake and it didn’t make sense to go back to bed, so I gathered up the Friday and Saturday morning papers and a cup of luke-warm coffee and veg’d at the kitchen table for a few hours. While I’ve cut down to about 3 – 4 cups of coffee a day, I’m surprised I can still drink it. I can actually somewhat taste it and the warm liquid sooths the throat somewhat, it also seems to cut the thick saliva to some extent. I mean a guy can only take so much, no sensation of taste, no chewing a thick juicy steak, no beer !!!!! At least I still have coffee. You know of course next week I’ll tell you it probably makes me throw up.
Sunday pretty much sucked (must have been that daylight savings time thingy). I got up around 7:00am tried to rinse out my mouth and throat and take some medication. I managed that, made a pot of coffee and went back to bed. Back up around 9:00am, made another attempt at rinsing out my mouth and settled in with the Sunday paper. Terry made me a bowl of malt-o-meal and I managed to get that down along with ½ cup of coffee. I finally got cleaned up and poured a pint of water into my PEG, I can’t drink more than a couple of sips of water at a time now, so I’m going to have to rely on the PEG for my mass hydration intake.
We visited a nursery this afternoon, the temperature has reached the low 80’s this week so all the flowers, grass, vegetables and whatever are ready to be planted (and then wiped out in a late spring freeze). By the time we got home I was beat. I managed some lunch and then slunk off for a 2hr nap. Terry planted flowers.
With 3 weeks of treatments left and 3 – 4 weeks of residual treatment effects after that, I can’t imagine what I’m going to have to deal with. I’m thinking the feeding tube was a good idea. I used it Friday to put in about a liter of water, I wasn’t able to drink as vigorously as I’ve been able to over the last few weeks. It’s important I keep hydrated and if that’s the only way, I have no problem using it.
I’m taking it a day at a time now making a decision on when my last work day will be. I’m talking as little as possible; I spend a lot of time caring to my mouth and throat. I can’t see subjecting my co-workers to my gargling and spitting, I’d spend more time in the men’s room than at my desk. So I’m thinking sometime this week I will pack it in and give up the day job. I can bring my work laptop home and keep in contact with it, maybe get a little work done. The idea of sitting around the house just doesn’t sit well with me. Sure, I’ve got the daily medical appointments to take care of, but that’s only a few hours a day. I guess it’s time to refocus from work to healing. It won’t be easy.
Ok, enough wimpering for one week. I’m not sure what new woes I’ll have for you next week, maybe the frogs will make an appearance.
Sunday, March 7, 2010
Can it get any worse?
I’m getting a bit tired of the routine and I’m looking forward to the end of treatments. I’ve received what I believe is the final schedule for both my chemo and radiation treatments and the last one is 30 March. I can’t wait.
No real change to this weeks events, Tuesday went a bit smoother. I decided to just go to the chemo treatment clinic at 7:00am and get in line for my blood to be drawn. I was the second one there, but it still took almost 45 minutes. Then it was down to the basement for my radiation treatment. No x-rays, I guess they were busy. Back up to chemo. I got plugged in and didn’t have to wait for the lab work to come back. Nurse Sandy came around to evaluate me and see how the treatment was going. I told her about the rash and acne, it’s subsided a bit on my face but still pretty prevalent on my chest and upper back. She gave me some ointment and a prescription for an antibiotic. I’ve used the ointment and it seems to be taking care of the acne. I haven’t used the antibiotic; I’d like to limit the number of drugs floating around in my system if possible. I also mentioned I was starting to get a bit nauseated in the mornings, so she gave me a prescription for that as well.
On Wednesday they took x-rays during my regular radiation treatment. I saw my radiation doctor and listed my side effects I was starting to experience. He took the blame for anything happening in my mouth and throat, but said I’d have to talk to the chemo folks about anything else. He said the dry mouth was going to get worse and my throat will start giving me trouble soon.
The rest of the week things started getting worse. My tongue now hurts all over and I have a couple of new sore spots in my mouth. Eating is getting to be uncomfortable and I’m starting to shy away from things that need a lot of chewing or that are dry. You know, pretty much everything. Fruit is off the list, too acidic. It won’t be long and the only thing going in my mouth will be liquid and mush. This is distressing because I really like to eat. I’ve been the cook in the house for about 35 years and during my travels I’m the Tony Bourdane type and will try just about anything once. Not being able to taste and eat my favorites is going to be torture.
This brings me to last weeks comment about asking my wife out to dinner, bad idea. At least I didn’t take her out to a Ruth’s Chris Steakhouse or something as equally expensive. We just went to one of the local TexMex places. I ordered chipotle enchiladas and a beer. I like spicy food and the enchiladas just tasted bland and a bit sour/bitter. Mouth feel is pretty strange now as well. For those of you that know me you know I’m somewhat of a beer aficionado. I like bold big flavored brews. Ordering a beer was a mistake, for one I couldn’t taste it period, and number two the carbonation and alcohol went straight to the sore tender spots in my mouth and throat and made it quite uncomfortable to drink. I of course being a cheap son of a bitch drank it anyway. I should have known better, but I haven’t had a drink since the 7th of Feb and a beer would really have been nice. I’m not sure what is going to be worse, not being able to enjoy the things I’ve been used to eating and drinking all my life or the pain I’m going to have to endure over the next several months.
Ok, that’s the mouth/throat issues, now on to the others. The rash/acne thing on my face is under control, but it spread to the chest and back, that’s a bit uncomfortable. I’ve now got some kind of dry cracking spots on the corners of my mouth which isn’t too bad until I open my mouth to put something into it. I’m beginning to get cracks around some of my fingernails and thumbs, this isn’t too much of an issue yet. The nausea got worse this week and I started taking PROCHLORPPERAZINE in the morning. The nausea doesn’t seem to bother me when I’m sitting around home or at work, but when I start moving around or I’m in the car, it shows up and causes some queasiness. I was given a prescription for PROCHLORPPERAZINE a antipsychotic, a group of psychoactive drugs commonly but not exclusively used to treat psychosis, which is typified by schizophrenia and the manic and mixed states associated with bipolar disorder, as well as many other conditions like nausea. I’m thinking they know more about me then they are letting on.
I enumerate these issues not to illicit sympathy, but to document for other throat/tongue cancer patients the side effects of the treatment. I got the idea for this blog from Mike Shafer who is a 3 ½ year throat cancer survivor. I learned a lot from his blog and recommended web sites. My side effects are tracking along pretty much like his and this can be educational for others and provide reassurance that we’re not alone in our trials and tribulations. Mike also has a line somewhere in his blog where he is enumerating his side effects that goes something like, “the side effects keep mounting and getting worse, I expect to walk out to get the paper one morning and my roof will be covered with frogs and my yard infested with locust.” This cracked me up and reminded me to keep a positive attitude, the effects will subside and life will get back to some version of normality in due time. And of course there’s also that quote, “What doesn't kill you makes you stronger.” With that in mind, I expect to be a superman when this is all over.
No real change to this weeks events, Tuesday went a bit smoother. I decided to just go to the chemo treatment clinic at 7:00am and get in line for my blood to be drawn. I was the second one there, but it still took almost 45 minutes. Then it was down to the basement for my radiation treatment. No x-rays, I guess they were busy. Back up to chemo. I got plugged in and didn’t have to wait for the lab work to come back. Nurse Sandy came around to evaluate me and see how the treatment was going. I told her about the rash and acne, it’s subsided a bit on my face but still pretty prevalent on my chest and upper back. She gave me some ointment and a prescription for an antibiotic. I’ve used the ointment and it seems to be taking care of the acne. I haven’t used the antibiotic; I’d like to limit the number of drugs floating around in my system if possible. I also mentioned I was starting to get a bit nauseated in the mornings, so she gave me a prescription for that as well.
On Wednesday they took x-rays during my regular radiation treatment. I saw my radiation doctor and listed my side effects I was starting to experience. He took the blame for anything happening in my mouth and throat, but said I’d have to talk to the chemo folks about anything else. He said the dry mouth was going to get worse and my throat will start giving me trouble soon.
The rest of the week things started getting worse. My tongue now hurts all over and I have a couple of new sore spots in my mouth. Eating is getting to be uncomfortable and I’m starting to shy away from things that need a lot of chewing or that are dry. You know, pretty much everything. Fruit is off the list, too acidic. It won’t be long and the only thing going in my mouth will be liquid and mush. This is distressing because I really like to eat. I’ve been the cook in the house for about 35 years and during my travels I’m the Tony Bourdane type and will try just about anything once. Not being able to taste and eat my favorites is going to be torture.
This brings me to last weeks comment about asking my wife out to dinner, bad idea. At least I didn’t take her out to a Ruth’s Chris Steakhouse or something as equally expensive. We just went to one of the local TexMex places. I ordered chipotle enchiladas and a beer. I like spicy food and the enchiladas just tasted bland and a bit sour/bitter. Mouth feel is pretty strange now as well. For those of you that know me you know I’m somewhat of a beer aficionado. I like bold big flavored brews. Ordering a beer was a mistake, for one I couldn’t taste it period, and number two the carbonation and alcohol went straight to the sore tender spots in my mouth and throat and made it quite uncomfortable to drink. I of course being a cheap son of a bitch drank it anyway. I should have known better, but I haven’t had a drink since the 7th of Feb and a beer would really have been nice. I’m not sure what is going to be worse, not being able to enjoy the things I’ve been used to eating and drinking all my life or the pain I’m going to have to endure over the next several months.
Ok, that’s the mouth/throat issues, now on to the others. The rash/acne thing on my face is under control, but it spread to the chest and back, that’s a bit uncomfortable. I’ve now got some kind of dry cracking spots on the corners of my mouth which isn’t too bad until I open my mouth to put something into it. I’m beginning to get cracks around some of my fingernails and thumbs, this isn’t too much of an issue yet. The nausea got worse this week and I started taking PROCHLORPPERAZINE in the morning. The nausea doesn’t seem to bother me when I’m sitting around home or at work, but when I start moving around or I’m in the car, it shows up and causes some queasiness. I was given a prescription for PROCHLORPPERAZINE a antipsychotic, a group of psychoactive drugs commonly but not exclusively used to treat psychosis, which is typified by schizophrenia and the manic and mixed states associated with bipolar disorder, as well as many other conditions like nausea. I’m thinking they know more about me then they are letting on.
I enumerate these issues not to illicit sympathy, but to document for other throat/tongue cancer patients the side effects of the treatment. I got the idea for this blog from Mike Shafer who is a 3 ½ year throat cancer survivor. I learned a lot from his blog and recommended web sites. My side effects are tracking along pretty much like his and this can be educational for others and provide reassurance that we’re not alone in our trials and tribulations. Mike also has a line somewhere in his blog where he is enumerating his side effects that goes something like, “the side effects keep mounting and getting worse, I expect to walk out to get the paper one morning and my roof will be covered with frogs and my yard infested with locust.” This cracked me up and reminded me to keep a positive attitude, the effects will subside and life will get back to some version of normality in due time. And of course there’s also that quote, “What doesn't kill you makes you stronger.” With that in mind, I expect to be a superman when this is all over.
Sunday, February 28, 2010
What a difference a week can make.
Three chemo and 9 radiation treatments down. I’m starting to feel the effects. My mouth and throat are getting dryer by the day and I’ve increased the amount of water I’m taking in and the number of times I gargle with Chaposol. I woke up Saturday morning with a very dry mouth and some of the dry spots are a bit sensitive. Also, my baby butt soft smooth skin on my face and neck has turned Gobie desert dry and I’ve started breaking out in acne. Nothing too serious yet, but I don’t remember by skin being this bad as a teenager. However, that was 40 years ago and I’ve probably put those divine memories in the bit bucket. I’ve also started to feel a bit nauseated early in the morning. A bit like a hangover; low grade headache, a bit dizzy and a little nauseated, not serious enough to toss my cookies, just a bit off. So far a Tylenal and something to eat and the feeling goes away fairly soon. Not so much today, the feeling has hung on through most of the day. Oh yea, and my sense of taste is getting a bit off as well. Things don’t taste bad, they just don’t taste right. I asked Terry if she wanted to go out for dinner tonight, it may be the last time in a while that I can enjoy a meal out.
Tuesday was a very busy day. I had my radiation and chemo treatments that day and I also met with a nutritionist and my radiation doctor. I arranged an early radiation treatment so I could have time to get blood drawn prior to the chemo treatment. Little did I know, they were going to run a set of x-rays to ensure proper aiming. Evidently, they are going to do that every Tuesday prior to the usual daily treatment. That added about ½ hour to the time I spent on the table. (with that damn tongue depressor thingy) Then it was off to get blood drawn and start my chemo. Luckily they don’t worry too much about schedules once you’re in the chair. I ended up waiting 2 hours for the lab results to come back before they started the chemo.
While I waited the nutritionist came by and we went over my diet and she recommended a few changes, mainly to double my calorie intake. So, essentially I can eat anything I want in as much quantity as I want and no one is going to complain. She said that sounds good now, but in a week or so it’s all going to change and my appetite is going to go south and my mouth and throat are going to be sore so I won’t want to eat. Then the challenge begins on how to get enough calories in me to sustain my weight and nutrition. I mentioned that Guinness was once thought to be very medicinal and that I had a feeding tube installed. She recommended some of the liquid meal replacement products instead. I don’t think we were on the same wave length.
I went back to work for a few hours, but the Benadryl was kicking my butt. When I got home a bit after 4 o’clock, I laid down on the couch and 2 hours later Terry woke me up. I’m thinking maybe I’ll just head home after chemo treatments from now on.
All of this doesn’t bode well for the coming weeks.
On the positive side I went to the gym twice this week. My port and PEG sights have healed well and I managed a light workout and some aerobics time. I felt re-invigorated and refreshed after the workouts. I’ll up the number of workouts next week if I can.
Tuesday was a very busy day. I had my radiation and chemo treatments that day and I also met with a nutritionist and my radiation doctor. I arranged an early radiation treatment so I could have time to get blood drawn prior to the chemo treatment. Little did I know, they were going to run a set of x-rays to ensure proper aiming. Evidently, they are going to do that every Tuesday prior to the usual daily treatment. That added about ½ hour to the time I spent on the table. (with that damn tongue depressor thingy) Then it was off to get blood drawn and start my chemo. Luckily they don’t worry too much about schedules once you’re in the chair. I ended up waiting 2 hours for the lab results to come back before they started the chemo.
While I waited the nutritionist came by and we went over my diet and she recommended a few changes, mainly to double my calorie intake. So, essentially I can eat anything I want in as much quantity as I want and no one is going to complain. She said that sounds good now, but in a week or so it’s all going to change and my appetite is going to go south and my mouth and throat are going to be sore so I won’t want to eat. Then the challenge begins on how to get enough calories in me to sustain my weight and nutrition. I mentioned that Guinness was once thought to be very medicinal and that I had a feeding tube installed. She recommended some of the liquid meal replacement products instead. I don’t think we were on the same wave length.
I went back to work for a few hours, but the Benadryl was kicking my butt. When I got home a bit after 4 o’clock, I laid down on the couch and 2 hours later Terry woke me up. I’m thinking maybe I’ll just head home after chemo treatments from now on.
All of this doesn’t bode well for the coming weeks.
On the positive side I went to the gym twice this week. My port and PEG sights have healed well and I managed a light workout and some aerobics time. I felt re-invigorated and refreshed after the workouts. I’ll up the number of workouts next week if I can.
Sunday, February 21, 2010
First Week of Radiation Treatments in the Books
Well the first week of radiotherapy went without incident and I am feeling little effects. I’m starting to get a little bit of dry mouth, so I’ve increased my water intake and the number of times I gargle with Caphasol. The Caphasol is supposed to reduce the affects of the radiation on my salivary glands. I also sat down with one of the radiation therapy nurses and she ran me through a check-list of things I need to be doing and not doing. We also went over the radiation effects. She gave me a tube of super moisturizer for my face and neck. I’m supposed to slather up a couple of times a day to keep my skin baby butt soft. They say I’m going to end up with what amounts to a serious sun burn on my neck and cheeks. The Erbitux has already resulted in a light skin rash on my forehead and across the bridge of my nose. It kind of feels like the 3rd day of a sunburn, a little bit itchy and it feels like it wants to peel, but it doesn’t.
I met with the doctors that put in my PEG and port on Wednesday morning and they took out a couple of stitches. We compared notes on just what a little pressure and a slight sting means. To them it doesn’t mean much, but they understand that patients have a little different understanding. I told them the joke about the guy that goes to the dentist for a toothache and when the dentist was numbing the patient up he told him he shouldn’t feel any pain. The patient grabbed the dentist by the balls and said, “you’ll feel what I feel.doc.” I told them we should apply the same principle when they take out my stitches. The doctor was very gentle. We also discussed my flushing of my feeding tube (PEG) and that I should be doing it daily. So now I have quite the ritual I go through every morning prior to going to work. Shower, change dressing, flush PEG, brush teeth, floss, gargle with caphasol, shave with my new electric razor, slather up with moisturizer and finally get dressed.
The electric razor was the radiation doctor/nurse’s idea. They don’t want me shaving with a regular razor because it results in tiny nicks that will have a hard time healing. Ok, I understand that. So I go to the store to buy an electric razor and do you know how much they want for electric razors? Holly molly, you can pay $250 bucks for the darn things. They’ve got options like automatic lather dispensers, and ones you can use in the shower. I have enough problems washing my back; I don’t need to add shaving in the shower. My luck I’d drop the darn thing on my foot, start hopping around, slip and bust my head open. I opted for a $50 version. I used an electric several years ago and was never much impressed so I went back to the regular old razors. I didn’t use a $250 one then either, maybe that was the problem.
I hope next week goes as well.
I met with the doctors that put in my PEG and port on Wednesday morning and they took out a couple of stitches. We compared notes on just what a little pressure and a slight sting means. To them it doesn’t mean much, but they understand that patients have a little different understanding. I told them the joke about the guy that goes to the dentist for a toothache and when the dentist was numbing the patient up he told him he shouldn’t feel any pain. The patient grabbed the dentist by the balls and said, “you’ll feel what I feel.doc.” I told them we should apply the same principle when they take out my stitches. The doctor was very gentle. We also discussed my flushing of my feeding tube (PEG) and that I should be doing it daily. So now I have quite the ritual I go through every morning prior to going to work. Shower, change dressing, flush PEG, brush teeth, floss, gargle with caphasol, shave with my new electric razor, slather up with moisturizer and finally get dressed.
The electric razor was the radiation doctor/nurse’s idea. They don’t want me shaving with a regular razor because it results in tiny nicks that will have a hard time healing. Ok, I understand that. So I go to the store to buy an electric razor and do you know how much they want for electric razors? Holly molly, you can pay $250 bucks for the darn things. They’ve got options like automatic lather dispensers, and ones you can use in the shower. I have enough problems washing my back; I don’t need to add shaving in the shower. My luck I’d drop the darn thing on my foot, start hopping around, slip and bust my head open. I opted for a $50 version. I used an electric several years ago and was never much impressed so I went back to the regular old razors. I didn’t use a $250 one then either, maybe that was the problem.
I hope next week goes as well.
Tuesday, February 16, 2010
First Radiation Treatment
Busy day today. I went into the office at 6:30am (may usual time) checked email and caught up with the rest of the crew. I coordinate with some NATO folks in Europe so early morning is the best time for us to communicate. It’s early for me, but it’s afternoon for them. I got to the hospital at 10:00am to have my blood drawn for lab work. I waited around as long as I could (10:40am) then had to go down to the radiation department in the hospital basement. I met with Dr. Atkins and we went over the treatment schedule and the radiation plan. He told me what was going to be radiated and how much. Then we went over the short and long term side effects. I think I’ve pretty well covered that in previous blogs, so I won’t go into it again.
Then it was down to the treatment room. It’s pretty dimly lit and they have a mural on the ceiling. When you’re lying on the table looking up, it’s like laying on a forest floor looking up into the trees. I guess that’s supposed to be relaxing. They showed me where to put my things, laid out my mouth guards and told me where to get my tongue depressor thingy. They told me they will first be taking some x-rays for measurement purposes and would follow that with the actual treatment. So, in went the tongue depressor thingy, on went the mask and the process began. It took about 15 minutes for the x-rays. They then came in and drew things on pieces of tape attached to the mask. They also drew a mark on the center of my chest (bulls eye if you will).
All this time I have to deal with the tongue depressor thingy. It makes your saliva run and it’s a bit hard to swallow while lying down strapped to the x-ray table. They also want you to be as still as possible. I have to essentially suck air through my mouth to draw the saliva to the back of my throat to try and swallow it. It’s not an easy task and as hard as I may try to relax my jaws are clamping down trying to hold the thingy in one place. That gets old pretty quick.
We started the radiation treatment, it took about 15 minutes. It’s like getting an x-ray but it stays on a lot longer. I couldn’t feel a thing. I just laid there watching the machine work its way around my upper body, stopping at designated spots and then a short zap, then on to the next position. I tried to stay as still as possible and do the swallowing thing in between zaps. They finally came in took off the mask and told me I was done. They instructed me to put my mouth guards away, put my shirt on and join them out in the office and they left. They don’t spend much time in the treatment area. We worked out a schedule, it’ll pretty much be at 9:30 each day except Tuesdays when I get my chemo treatments. They will be flexible as to my radiation treatment times on the days I get chemo. Then I was off to my chemo treatment.
Back on the 6th floor as I approached the reception desk in the chemo clinic my nurse saw me and told me to go to her treatment room (room C). She set up to draw blood out of my port (lots of syringes, gauze, vials and stuff). She numbed the area a little and then flushed the port leaving in a connection for the IV bags. She hooked me up to a regular drip and we waited for my chemo to arrive. The port is very convenient, there’s no pain and I don’t have to put up with some tech sticking one arm then the other, then on to a hand, back to an arm, digging around with the needle to find a good vein. (port – good, tech with needle – bad) I had arrived a bit early for my appointment so the drugs weren’t there yet. I was set up in a nice recliner with a pillow, a warm blanket and a TV was showing the Olympic Games. Two other people were already there getting their treatments. After a half hour or so my drugs came and she hooked me up, first a dose of Benadryl, then the super juice. This treatment was to take about an hour. I started watching TV and the Benadryl kicked in and off to la la land I went. I woke up with the over powering urge to pee. I had about 10 minutes of chemo left in the bag, but my bladder wasn’t having any of it and insisted that it be emptied. Off I trundled with my rack of drugs to the restroom. It was finally over; Nurse Pace flushed my port and sent me on my way with a nice hug.
I then went to the waiting area for my next appointment with Dr. Richard (the chemo Dr.). He wanted to know how I was feeling and if I was experiencing any side effects. It was a pretty fast meeting; he was about a half hour behind schedule. He set me up with another appointment in 4 weeks.
I guess this was a pretty boring update, but that’s going to be my life for the next 6 weeks. I’ll try and keep the boring stuff to a minimum, but I’m hoping not to have to report much on side effects. Cross your fingers.
Tomorrow, I meet with the doctors that installed my port and PEG. That should be interesting.
Then it was down to the treatment room. It’s pretty dimly lit and they have a mural on the ceiling. When you’re lying on the table looking up, it’s like laying on a forest floor looking up into the trees. I guess that’s supposed to be relaxing. They showed me where to put my things, laid out my mouth guards and told me where to get my tongue depressor thingy. They told me they will first be taking some x-rays for measurement purposes and would follow that with the actual treatment. So, in went the tongue depressor thingy, on went the mask and the process began. It took about 15 minutes for the x-rays. They then came in and drew things on pieces of tape attached to the mask. They also drew a mark on the center of my chest (bulls eye if you will).
All this time I have to deal with the tongue depressor thingy. It makes your saliva run and it’s a bit hard to swallow while lying down strapped to the x-ray table. They also want you to be as still as possible. I have to essentially suck air through my mouth to draw the saliva to the back of my throat to try and swallow it. It’s not an easy task and as hard as I may try to relax my jaws are clamping down trying to hold the thingy in one place. That gets old pretty quick.
We started the radiation treatment, it took about 15 minutes. It’s like getting an x-ray but it stays on a lot longer. I couldn’t feel a thing. I just laid there watching the machine work its way around my upper body, stopping at designated spots and then a short zap, then on to the next position. I tried to stay as still as possible and do the swallowing thing in between zaps. They finally came in took off the mask and told me I was done. They instructed me to put my mouth guards away, put my shirt on and join them out in the office and they left. They don’t spend much time in the treatment area. We worked out a schedule, it’ll pretty much be at 9:30 each day except Tuesdays when I get my chemo treatments. They will be flexible as to my radiation treatment times on the days I get chemo. Then I was off to my chemo treatment.
Back on the 6th floor as I approached the reception desk in the chemo clinic my nurse saw me and told me to go to her treatment room (room C). She set up to draw blood out of my port (lots of syringes, gauze, vials and stuff). She numbed the area a little and then flushed the port leaving in a connection for the IV bags. She hooked me up to a regular drip and we waited for my chemo to arrive. The port is very convenient, there’s no pain and I don’t have to put up with some tech sticking one arm then the other, then on to a hand, back to an arm, digging around with the needle to find a good vein. (port – good, tech with needle – bad) I had arrived a bit early for my appointment so the drugs weren’t there yet. I was set up in a nice recliner with a pillow, a warm blanket and a TV was showing the Olympic Games. Two other people were already there getting their treatments. After a half hour or so my drugs came and she hooked me up, first a dose of Benadryl, then the super juice. This treatment was to take about an hour. I started watching TV and the Benadryl kicked in and off to la la land I went. I woke up with the over powering urge to pee. I had about 10 minutes of chemo left in the bag, but my bladder wasn’t having any of it and insisted that it be emptied. Off I trundled with my rack of drugs to the restroom. It was finally over; Nurse Pace flushed my port and sent me on my way with a nice hug.
I then went to the waiting area for my next appointment with Dr. Richard (the chemo Dr.). He wanted to know how I was feeling and if I was experiencing any side effects. It was a pretty fast meeting; he was about a half hour behind schedule. He set me up with another appointment in 4 weeks.
I guess this was a pretty boring update, but that’s going to be my life for the next 6 weeks. I’ll try and keep the boring stuff to a minimum, but I’m hoping not to have to report much on side effects. Cross your fingers.
Tomorrow, I meet with the doctors that installed my port and PEG. That should be interesting.
Wednesday, February 10, 2010
The Adventure Begins
On Monday, 8 Feb, I went to Interventional Radiology to have my Port-A-Catheter and PEG installed. These procedures were to be given under conscious sedation, which means I’m awake, but so drugged out of it I shouldn’t remember a thing. They lied. I remember it all. I didn’t feel much, but I remember it all. The operating room was ice cold, they gave me the usual open backed gown and let me keep my socks on (like that was going to keep me warm. They did put a blanket over me while they prepped me for the procedure and we waited for the doctors. They shaved my upper right chest and shoulder, and then washed it off with ice cold alcohol. Then they opened up what seemed to be a large paper sheet with plastic adhesive sections. They tore off a section of the paper revealing a clear section probably 12 inches by 12 inches and pressed that on my chest, neck and shoulder. They started the happy juice and a few minutes later told me I was going to feel a slight prick on my lower neck just at my clavicle. Prick my ass! evidently the happy juice hadn’t quite taken affect yet. They fiddled around that area for a while and then started 4 or 5 inches below that on my chest. They made an incision there which I didn’t really feel and they inserted the port and snaked the tube to my vein. They checked it all out and sewed me up. Then they started on the PEG. Same procedure, shaved the left side of my belly about 6 inches above my belly button and about 3 inches to the left. Again with the ice cold alcohol and the plastic piece. Then they told me they were going to insert a tube in my nose down my throat and into my stomach. I told them I’d had the camera done the same way to find the tumor on my tongue and they said the tube was smaller, so it shouldn’t bother me too much. Right ! They sprayed some stuff down my throat that was supposed to numb it so I didn’t feel the tube, it worked to some extent. I could feel it at the back of my nasal passage and right where my throat and esophagus meet up. It wasn’t terribly uncomfortable, it just felt like something was caught in my throat and I needed to swallow a lot. Then started the poking and probing into my stomach. I won’t go into the gory details, but there was a lot of “you’re going to feel some pressure now,” statements. This all took about 2 hours and left me with a tender sore shoulder and a very tender stomach with a 8 inch tube hanging out of it.
They brought me up to one of the ward and gave me a nice room to myself with a view. A nurse and a tech came in and introduced themselves, took my vital signs and hooked me up to an IV bag. Then I was told I couldn’t eat or drink anything for 24 hours. This was around 3:00pm. I hadn’t eaten anything since 7:00pm the day before and hadn’t had anything to drink since mid-night. Terry hung around until about 6:00pm they headed home to feed the dogs. Around 7:00pm I got a room mate, an Air Force basic trainee in for a hernia operation. He was a bit groggy and went through the nurse, tech introduction drill like I did a few hours earlier.
Every 3 hours someone came by and checked our vitals and asked what our pain level was on a scale of 1 to 10. I was somewhat uncomfortable, but declined any pain medication. I guess the pain medication hadn’t worn off from the procedures earlier in the day. About 10:00pm they came by with my cholesterol medication, so I told them I’d take some pain medication then so I could fall asleep.
About that time my room mate got lonely and decided to strike up a conversation. He was an Airman about 19 – 20 years old and had just graduated from basic training. He is waiting to be shipped off to his technical school in Monterey, California. It was a little interesting the 25 year, retired Chief Master Sergeant and the newbie Airman swapping stories. He’s a good kid and will probably go far, if he stays in. I let him use my cell phone to call his parents and let them know he was doing well.
I did sleep, but only in 3 hour stints. I’m not used to sleeping on my back and after so many hours of lying on my back it was getting a little uncomfortable. Oh yeah, at 10:00pm they also decided to strap some leggings around my calves to prevent blood clots. These things were hooked up to an air pump that inflated the leggings every 40 seconds or so. They held the air for just a few seconds then deflated. I still managed to get some sleep.
Around 7:30am they brought my room mate his breakfast, I got a mouth full of water and a pill. We were both scheduled to be discharged sometime during the morning. We all knew that I had a 2:00pm appointment for my first chemo therapy. I was discharged at 1:50pm and high tailed it down one floor to the Oncology clinic.
I checked in and took a seat in the waiting room, I had a splitting headache, I think due to lack of coffee. My plan was to be discharged and go down and get some coffee. That obviously did not happen. One of the nurses came and got me, put me in a very comfortable recliner and went over the procedure. First I was to receive a dose of Benadryl and a dose of Nexium, these were to fight off some of the side effects of the Erbitux. They hooked me up, offered me a Girl Scout cookie, which I turned down, but sheepishly asked if they had any coffee. The nurse said she didn’t think so, but she’d check. Ten minutes later she came back with a large steaming cup of coffee. She went and made a pot just for me. I think I’m going to like these folks. Once the Benadryl and nexium were administered they hooked up the bag of Erbitux. Being as it was my first session, I got a double dose and it was going to take 2 hours to administer. I was told to let them know if I was feeling any side effects immediately. Once the coffee cooled enough to drink I downed about ¾ of the cup, that eased my headache to a manageable level. The Benadryl kicked in and made me drowsy and I drifted off for about an hour and a half. About that time Terry showed up to collect me, I was the last one left in the therapy room, and then they told me I needed to be watched for another hour. They brought me to another location on the floor, set-up in another recliner and we waited an hour. No side effects, they let me go home. I’d been in the hospital 33 hours.
We went home, had some dinner, watched a little TV, I took a Percocet and slept through the night.
At 4:30am the alarm went off and Terry got up to get ready for work. I gingerly got out of bed, went into the kitchen to make Terry her lunch and decided my stomach hurt just enough where I wouldn’t go into work. I finished making her lunch, popped a Percocet and went back to bed.
So, I’m officially in therapy. Next Tuesday I start radiation . . . the adventure continues.
They brought me up to one of the ward and gave me a nice room to myself with a view. A nurse and a tech came in and introduced themselves, took my vital signs and hooked me up to an IV bag. Then I was told I couldn’t eat or drink anything for 24 hours. This was around 3:00pm. I hadn’t eaten anything since 7:00pm the day before and hadn’t had anything to drink since mid-night. Terry hung around until about 6:00pm they headed home to feed the dogs. Around 7:00pm I got a room mate, an Air Force basic trainee in for a hernia operation. He was a bit groggy and went through the nurse, tech introduction drill like I did a few hours earlier.
Every 3 hours someone came by and checked our vitals and asked what our pain level was on a scale of 1 to 10. I was somewhat uncomfortable, but declined any pain medication. I guess the pain medication hadn’t worn off from the procedures earlier in the day. About 10:00pm they came by with my cholesterol medication, so I told them I’d take some pain medication then so I could fall asleep.
About that time my room mate got lonely and decided to strike up a conversation. He was an Airman about 19 – 20 years old and had just graduated from basic training. He is waiting to be shipped off to his technical school in Monterey, California. It was a little interesting the 25 year, retired Chief Master Sergeant and the newbie Airman swapping stories. He’s a good kid and will probably go far, if he stays in. I let him use my cell phone to call his parents and let them know he was doing well.
I did sleep, but only in 3 hour stints. I’m not used to sleeping on my back and after so many hours of lying on my back it was getting a little uncomfortable. Oh yeah, at 10:00pm they also decided to strap some leggings around my calves to prevent blood clots. These things were hooked up to an air pump that inflated the leggings every 40 seconds or so. They held the air for just a few seconds then deflated. I still managed to get some sleep.
Around 7:30am they brought my room mate his breakfast, I got a mouth full of water and a pill. We were both scheduled to be discharged sometime during the morning. We all knew that I had a 2:00pm appointment for my first chemo therapy. I was discharged at 1:50pm and high tailed it down one floor to the Oncology clinic.
I checked in and took a seat in the waiting room, I had a splitting headache, I think due to lack of coffee. My plan was to be discharged and go down and get some coffee. That obviously did not happen. One of the nurses came and got me, put me in a very comfortable recliner and went over the procedure. First I was to receive a dose of Benadryl and a dose of Nexium, these were to fight off some of the side effects of the Erbitux. They hooked me up, offered me a Girl Scout cookie, which I turned down, but sheepishly asked if they had any coffee. The nurse said she didn’t think so, but she’d check. Ten minutes later she came back with a large steaming cup of coffee. She went and made a pot just for me. I think I’m going to like these folks. Once the Benadryl and nexium were administered they hooked up the bag of Erbitux. Being as it was my first session, I got a double dose and it was going to take 2 hours to administer. I was told to let them know if I was feeling any side effects immediately. Once the coffee cooled enough to drink I downed about ¾ of the cup, that eased my headache to a manageable level. The Benadryl kicked in and made me drowsy and I drifted off for about an hour and a half. About that time Terry showed up to collect me, I was the last one left in the therapy room, and then they told me I needed to be watched for another hour. They brought me to another location on the floor, set-up in another recliner and we waited an hour. No side effects, they let me go home. I’d been in the hospital 33 hours.
We went home, had some dinner, watched a little TV, I took a Percocet and slept through the night.
At 4:30am the alarm went off and Terry got up to get ready for work. I gingerly got out of bed, went into the kitchen to make Terry her lunch and decided my stomach hurt just enough where I wouldn’t go into work. I finished making her lunch, popped a Percocet and went back to bed.
So, I’m officially in therapy. Next Tuesday I start radiation . . . the adventure continues.
Saturday, February 6, 2010
What a week !
On Thursday, 4 Feb, I went for my mask fitting and radiation simulation. I’m writing the President and letting him know I’ve found a new enhanced interrogation technique that makes water boarding obsolete. If we want answers to any questions just send the guilty party down to the radiation office in the basement of Wilford Hall Medical Center and have them fitted with a radiation therapy mask, after 20 minutes they’ll be singing like birds.
They lay you down on the treatment table, have you put in your teeth radiation scatter guards and then have you bite down on something that looks like a mini-fudgecycle that’s made out of Styrofoam. This of course gets the drool machine going. All this time they’ve been warming up a sheet of plastic mesh to make it soft and pliable. As you’re laying on the table with your mouth guards in, sucking on the styrofoam tongue depressor they drop this hot mesh over your head and upper chest and ratchet it down. Kind of like those vacuum toys we had as kids, heat up a small sheet of plastic, place it over a mold then turn on the vacuum and wha-la you have a perfect impression of my head. This thing takes about 15 minutes to cool and become rock hard. Its purpose is to lock your head and upper torso into the same position every time you come in for a treatment. I’m not claustrophobic so that didn’t bother me all that much, what did get my attention was the fact that I was laying on my back with this huyanker in my mouth, drooling and having a very hard time swallowing. (hence the letter to the President) Early on in the radiation treatment this won’t be too bad, but once my throat starts giving me problems I can see where I’m going to be one uncomfortable hombre. Later on that same day we did a CT scan to set-up the radiation treatment aiming points. They used the lock-down mask and the tongue depressor thingy again. I’m beginning to think that maybe surgery wasn’t such a bad option.
I also went and got pre-admitted for my procedures on Monday the 8th. That’s when they will be putting in the PEG and CVC. I’ve got to stay over night in the hospital so they can monitor the PEG, they don’t want my stomach contents leaking out into my abdominal cavity. They tell me that’s a bad thing. So it’ll be like a big sleep-over, movies, pop corn and maybe a pillow fight with some retired Korean War Ace with a colostomy bag.
Friday I went in and saw Ms Phyllis at speech pathology and she gave me a bunch of exercises for my tongue and throat. We were like a couple of kids sitting across a table from each other sticking our tongues out at each other and making silly noises to stretch my vocal cords. I make light of all this, but I know it’s all good therapy to keep my throat in shape and ensure my ability to continue to swallow.
I also met with Nurse Sandra; she went over my chemo therapy and all of the side effects of Erbitux, nutrition, the PEG and CVC, the importance of staying healthy and what to do if I get a fever or start feeling real bad. She seems very concerned and caring. She must have one hell of a positive attitude to continue working in a chemotherapy clinic. I’ve been looking around and there are a lot of seriously sick people around there. Some newbie is going to see me in 4 – 5 weeks and think the same thing.
So, it’s been an interesting week. So far I’ve been keeping a positive attitude and have been able to make what I think are the right decisions for my treatment. My wife, Terry has been a good sounding board and has provided the needed course corrections when I’m unsure of something. Therapy starts next week with my first treatment of Erbitux and the following week starts my once a day radiation treatments. In the future I may not be as flippant and sarcastic about my daily happenings, but rest assured I’ll make up for it when this is all behind me.
They lay you down on the treatment table, have you put in your teeth radiation scatter guards and then have you bite down on something that looks like a mini-fudgecycle that’s made out of Styrofoam. This of course gets the drool machine going. All this time they’ve been warming up a sheet of plastic mesh to make it soft and pliable. As you’re laying on the table with your mouth guards in, sucking on the styrofoam tongue depressor they drop this hot mesh over your head and upper chest and ratchet it down. Kind of like those vacuum toys we had as kids, heat up a small sheet of plastic, place it over a mold then turn on the vacuum and wha-la you have a perfect impression of my head. This thing takes about 15 minutes to cool and become rock hard. Its purpose is to lock your head and upper torso into the same position every time you come in for a treatment. I’m not claustrophobic so that didn’t bother me all that much, what did get my attention was the fact that I was laying on my back with this huyanker in my mouth, drooling and having a very hard time swallowing. (hence the letter to the President) Early on in the radiation treatment this won’t be too bad, but once my throat starts giving me problems I can see where I’m going to be one uncomfortable hombre. Later on that same day we did a CT scan to set-up the radiation treatment aiming points. They used the lock-down mask and the tongue depressor thingy again. I’m beginning to think that maybe surgery wasn’t such a bad option.
I also went and got pre-admitted for my procedures on Monday the 8th. That’s when they will be putting in the PEG and CVC. I’ve got to stay over night in the hospital so they can monitor the PEG, they don’t want my stomach contents leaking out into my abdominal cavity. They tell me that’s a bad thing. So it’ll be like a big sleep-over, movies, pop corn and maybe a pillow fight with some retired Korean War Ace with a colostomy bag.
Friday I went in and saw Ms Phyllis at speech pathology and she gave me a bunch of exercises for my tongue and throat. We were like a couple of kids sitting across a table from each other sticking our tongues out at each other and making silly noises to stretch my vocal cords. I make light of all this, but I know it’s all good therapy to keep my throat in shape and ensure my ability to continue to swallow.
I also met with Nurse Sandra; she went over my chemo therapy and all of the side effects of Erbitux, nutrition, the PEG and CVC, the importance of staying healthy and what to do if I get a fever or start feeling real bad. She seems very concerned and caring. She must have one hell of a positive attitude to continue working in a chemotherapy clinic. I’ve been looking around and there are a lot of seriously sick people around there. Some newbie is going to see me in 4 – 5 weeks and think the same thing.
So, it’s been an interesting week. So far I’ve been keeping a positive attitude and have been able to make what I think are the right decisions for my treatment. My wife, Terry has been a good sounding board and has provided the needed course corrections when I’m unsure of something. Therapy starts next week with my first treatment of Erbitux and the following week starts my once a day radiation treatments. In the future I may not be as flippant and sarcastic about my daily happenings, but rest assured I’ll make up for it when this is all behind me.
Tuesday, February 2, 2010
Second Opinion Anyone?
First off, I went in and talked to Dr. Richard today. It was pretty much a replay of Friday’s telephone conversation, but he showed me a couple of studies concerning the use of Cisplatin and Erbitux. The weren’t side by side comparisons, but they were enough for us to make an educated decision to go the Erbitux route for treatment along with radiation. We also discussed the installation of the CVC and the PEG again. I agreed to both, figuring it’s easier to get them installed at the beginning rather then wait until my immune system is beat down and have to go into the hospital for same day surgery to get them installed. I may not have to use the PEG for 4 – 5 weeks (or maybe not at all). I figured if anything I could always use it for hydration if swallowing gets to be too much of a pain.
On to the second opinion. I met with Dr. Prestidge at the Texas Cancer Center here in San Antonio. He’s an ex-Air Force radiation-oncologist. We did the mandatory medical history stuff and then on to the review of symptoms and what treatment I’ve received since Nov 09. Then he did a physical exam and stuck his finger down my throat until I gagged. Then we got down to the meat of the reason I was there, to compare notes and pick his brain. Good or bad he confirmed everything the other doctors have been telling me and lowered my anxiety level about thinking the radiation technology they have here at Wilford Hall Medical Center where I am being treated is as good as anywhere else. He also assured me that the other radiation technologies I was asking about were not targeted towards my type of cancer or my stage of cancer. We discussed the chemo therapy options and he agreed that Erbitux was a good choice. He gave me some samples of products he thought I should ask about when I see Dr. Akins again that will address some of the side effects of the radiation treatment and Erbitux. All in all, I felt good about the second opinion and feel good about going ahead with the treatment doctors Akins and Richard are recommending.
More appointments later in the week; mask fitting and simulation run through. I should get an appointment for the same day surgery for installation of the CVC and PEG very soon. They want to give me my first dose of Erbitux on Tuesday next week and they would like the CVC installed by then.
On to the second opinion. I met with Dr. Prestidge at the Texas Cancer Center here in San Antonio. He’s an ex-Air Force radiation-oncologist. We did the mandatory medical history stuff and then on to the review of symptoms and what treatment I’ve received since Nov 09. Then he did a physical exam and stuck his finger down my throat until I gagged. Then we got down to the meat of the reason I was there, to compare notes and pick his brain. Good or bad he confirmed everything the other doctors have been telling me and lowered my anxiety level about thinking the radiation technology they have here at Wilford Hall Medical Center where I am being treated is as good as anywhere else. He also assured me that the other radiation technologies I was asking about were not targeted towards my type of cancer or my stage of cancer. We discussed the chemo therapy options and he agreed that Erbitux was a good choice. He gave me some samples of products he thought I should ask about when I see Dr. Akins again that will address some of the side effects of the radiation treatment and Erbitux. All in all, I felt good about the second opinion and feel good about going ahead with the treatment doctors Akins and Richard are recommending.
More appointments later in the week; mask fitting and simulation run through. I should get an appointment for the same day surgery for installation of the CVC and PEG very soon. They want to give me my first dose of Erbitux on Tuesday next week and they would like the CVC installed by then.
Sunday, January 31, 2010
Treatment Information
31 January 2010
I called Dr. Akins office on Friday (29 Jan) to find out if my referral had been approved by Tricare and found out the original doctor that Dr. Akins wanted me to see wasn’t on the approved list, so I was being referred to someone else, and he is in the process of moving offices. I should find out something on Monday, 1 Feb.
I then talked to Dr. Akins and told him I wanted to go forward with the radiotherapy and to start the ball rolling. His office set me up with appointments on the following Thursday (4 Feb) for my mask fitting and the so-called tattoo markings on my neck for targeting. We also talked about treating my lymph glands in my neck and we agreed that radiotherapy was a better alternative to a radical neck dissection at this time. We also discussed using amifostine to mitigate the affects of radiation on my salivary glands. He didn’t recommend it, due to its side affects and lack of medical personnel to monitor me during its use. I wasn’t happy with that answer and fumed about it all the way home from work that afternoon. Dr. Akins said he would call Dr. Richards (hematology) and discuss chemo therapy alternatives. He is also contacting the dental clinic to have me evaluated to see if I need any dental work prior to the radiotherapy and to have them make me up some radiation splash guards for my teeth.
Once I arrived home I got a call from Dr. Richards, he asked if I could come in on Tuesday (2 Feb) to discuss chemo/anti-body treatment. He wanted to do this face-to-face rather than over the phone, but we still talked about the options. He said he had talked to Dr. Akins and that he had recommended using Erbitux (cetuximab) ((Cetuximab binds specifically to the EGFR on both normal and tumor cells, and competitively inhibits the binding of epidermal growth factor (EGF) and other ligands, such as transforming growth factor–alpha. Cetuximab can mediate antibody-dependent cellular cytotoxicity (ADCC) against certain human tumor types. Studies have shown that cetuximab inhibits the growth and survival of tumor cells that express the EGFR.)) I’m guessing all of that is good. Erbitux will have to be started a week prior to radiotherapy, so we need to make up our mind quick which drug we are going to use (erbitux or cisplatin). Erbitux has some pretty ugly side affects that pile on the radiation side affects so I’m not looking forward to its use.
We also discussed the use of Cisplatin, a platinum-based chemotherapy drug used to treat various types of cancers. It was the first member of a class of anti-cancer drugs. Platinum complexes react in vivo, binding to and causing crosslinking of DNA which ultimately triggers apoptosis (programmed cell death). Again, I guess this is good.
It also has ugly side affects.
Dr. Richards also suggested installing a central venous catheter ("central line", "CVC", "central venous line" or "central venous access catheter") is a catheter placed into a large vein in the chest (subclavian vein). It is used to administer medication or fluids, obtain blood tests. Certain medications are preferably given through a central line (i.e. cisplatin etc.) He also recommended installing a Percutaneous endoscopic gastrostomy (PEG). The purpose of a PEG is to feed patients who cannot swallow food and to provide fluids and nutrition directly into the stomach. A surgical opening into the stomach is made through the skin using a flexible lighted instrument (endoscope) passed orally into the stomach to assist with the placement of the tube and secure it in place.
Don’t these 2 procedures sound like fun? They’ve had trouble finding veins to take blood and for the biopsy procedure on the 8th, so the CVC is probably a great idea if I’m going to undergo chemo. The PEG on the other hand is a precaution to when or if I can’t eat due to the side affects of radiation/chemo. Two people I’ve talked to that have undergone the same treatment haven’t had a PEG installed. One didn’t need it, but the other probably did, he ended up in the hospital a couple of times due to dehydration.
So it looks I’m going to be having a great time over the next 2 weeks preparing for my treatments starting (hopefully) on 16 Feb.
I called Dr. Akins office on Friday (29 Jan) to find out if my referral had been approved by Tricare and found out the original doctor that Dr. Akins wanted me to see wasn’t on the approved list, so I was being referred to someone else, and he is in the process of moving offices. I should find out something on Monday, 1 Feb.
I then talked to Dr. Akins and told him I wanted to go forward with the radiotherapy and to start the ball rolling. His office set me up with appointments on the following Thursday (4 Feb) for my mask fitting and the so-called tattoo markings on my neck for targeting. We also talked about treating my lymph glands in my neck and we agreed that radiotherapy was a better alternative to a radical neck dissection at this time. We also discussed using amifostine to mitigate the affects of radiation on my salivary glands. He didn’t recommend it, due to its side affects and lack of medical personnel to monitor me during its use. I wasn’t happy with that answer and fumed about it all the way home from work that afternoon. Dr. Akins said he would call Dr. Richards (hematology) and discuss chemo therapy alternatives. He is also contacting the dental clinic to have me evaluated to see if I need any dental work prior to the radiotherapy and to have them make me up some radiation splash guards for my teeth.
Once I arrived home I got a call from Dr. Richards, he asked if I could come in on Tuesday (2 Feb) to discuss chemo/anti-body treatment. He wanted to do this face-to-face rather than over the phone, but we still talked about the options. He said he had talked to Dr. Akins and that he had recommended using Erbitux (cetuximab) ((Cetuximab binds specifically to the EGFR on both normal and tumor cells, and competitively inhibits the binding of epidermal growth factor (EGF) and other ligands, such as transforming growth factor–alpha. Cetuximab can mediate antibody-dependent cellular cytotoxicity (ADCC) against certain human tumor types. Studies have shown that cetuximab inhibits the growth and survival of tumor cells that express the EGFR.)) I’m guessing all of that is good. Erbitux will have to be started a week prior to radiotherapy, so we need to make up our mind quick which drug we are going to use (erbitux or cisplatin). Erbitux has some pretty ugly side affects that pile on the radiation side affects so I’m not looking forward to its use.
We also discussed the use of Cisplatin, a platinum-based chemotherapy drug used to treat various types of cancers. It was the first member of a class of anti-cancer drugs. Platinum complexes react in vivo, binding to and causing crosslinking of DNA which ultimately triggers apoptosis (programmed cell death). Again, I guess this is good.
It also has ugly side affects.
Dr. Richards also suggested installing a central venous catheter ("central line", "CVC", "central venous line" or "central venous access catheter") is a catheter placed into a large vein in the chest (subclavian vein). It is used to administer medication or fluids, obtain blood tests. Certain medications are preferably given through a central line (i.e. cisplatin etc.) He also recommended installing a Percutaneous endoscopic gastrostomy (PEG). The purpose of a PEG is to feed patients who cannot swallow food and to provide fluids and nutrition directly into the stomach. A surgical opening into the stomach is made through the skin using a flexible lighted instrument (endoscope) passed orally into the stomach to assist with the placement of the tube and secure it in place.
Don’t these 2 procedures sound like fun? They’ve had trouble finding veins to take blood and for the biopsy procedure on the 8th, so the CVC is probably a great idea if I’m going to undergo chemo. The PEG on the other hand is a precaution to when or if I can’t eat due to the side affects of radiation/chemo. Two people I’ve talked to that have undergone the same treatment haven’t had a PEG installed. One didn’t need it, but the other probably did, he ended up in the hospital a couple of times due to dehydration.
So it looks I’m going to be having a great time over the next 2 weeks preparing for my treatments starting (hopefully) on 16 Feb.
Tuesday, January 26, 2010
We make a decision, I think.
26 Jan 2010,
Today I find out a co-worker had the same cancer as me 13 years ago. He offers to talk to me about it and we meet almost immediately. He tells me his story and recommends staying away fromr surgery. Our bodies weren’t meant to be cut into, stay away from any invasive treatments. In addition to a tumor on his tongue, he also had a lymph tumor and they did a radical neck dissection on the left side of his neck. His cancer was cured by chemo and radiation. He was given the full dose of radiation and will not be able to be radiated again. He’s been cancer free for 13 years.
Dr. Akins called this afternoon and said they were recommending radiation as a course of treatment. I asked him about the referral and he said he was hand carrying my records to a colleague and see if they can set up the referral through the proper administrative folks. Meanwhile I need to make a decision and let him know so he can set up the simulation and schedule the treatments. My head is spinning again.
I talk to Terry and we discuss the pro’s and con’s of the surgery and radiotherapy and decide to go with the radiotherapy. I can probably learn to deal with the dry mouth.
Today I find out a co-worker had the same cancer as me 13 years ago. He offers to talk to me about it and we meet almost immediately. He tells me his story and recommends staying away fromr surgery. Our bodies weren’t meant to be cut into, stay away from any invasive treatments. In addition to a tumor on his tongue, he also had a lymph tumor and they did a radical neck dissection on the left side of his neck. His cancer was cured by chemo and radiation. He was given the full dose of radiation and will not be able to be radiated again. He’s been cancer free for 13 years.
Dr. Akins called this afternoon and said they were recommending radiation as a course of treatment. I asked him about the referral and he said he was hand carrying my records to a colleague and see if they can set up the referral through the proper administrative folks. Meanwhile I need to make a decision and let him know so he can set up the simulation and schedule the treatments. My head is spinning again.
I talk to Terry and we discuss the pro’s and con’s of the surgery and radiotherapy and decide to go with the radiotherapy. I can probably learn to deal with the dry mouth.
Thursday, January 21, 2010
Sales Pitch
I met with Dr. Richard on 19 Jan 2010 to discuss chemotherapy. We went through the medical history drill, my symptoms that led me to being diagnosed and then a discussion about chemo treatments. In the end Dr Richard said this cancer wasn’t a good candidate for primary chemotherapy, but he’d talk to Dr. Eller, meet with the tumor board and see what everyone else was recommending. He then gave me a physical exam and talked about hockey.
My wife and I met with Dr. Akins on 20 Jan 2010 to discuss radiation therapy. Again the medical history drill, blah, blah, blah. Dr. Akins then went through what radiation therapy he would recommend. Then we started asking questions. What technology was available? He said they have IMRT. I asked him if they had TOMO radiation therapy, he said no. I asked him if TOMO wasn’t better than IMRT, he said they do good PR, and make a big deal of the technology, but it really isn’t any better than IMRT. I wasn’t impressed with his answer. He said IMRT is a good treatment for my diagnosed tumor and I should seriously consider it. We asked for a referral, he wasn’t impressed. I asked him if he had seen the CAT scan, and if it showed how deep the tumor went into my tongue. We went and reviewed the CAT scan. I was impressed; I’d never seen one before. It showed my tumor very well, but we couldn’t tell how deep it went into my tongue. We talked some more, he did an exam. Then he offered a different procedure. The procedure consists of placing radioactive implants in or near the tumor twice a day for 5 days. They can give higher doses for shorter periods at the primary tumor site. This appealed to me because it was a shorter treatment time, affected the salivary glands less, but the procedure wasn’t offered at my medical facility. Dr. Akins said he’d call a friend that works with the procedure on the east coast and see what he recommended.
My wife and I met with Dr. Akins on 20 Jan 2010 to discuss radiation therapy. Again the medical history drill, blah, blah, blah. Dr. Akins then went through what radiation therapy he would recommend. Then we started asking questions. What technology was available? He said they have IMRT. I asked him if they had TOMO radiation therapy, he said no. I asked him if TOMO wasn’t better than IMRT, he said they do good PR, and make a big deal of the technology, but it really isn’t any better than IMRT. I wasn’t impressed with his answer. He said IMRT is a good treatment for my diagnosed tumor and I should seriously consider it. We asked for a referral, he wasn’t impressed. I asked him if he had seen the CAT scan, and if it showed how deep the tumor went into my tongue. We went and reviewed the CAT scan. I was impressed; I’d never seen one before. It showed my tumor very well, but we couldn’t tell how deep it went into my tongue. We talked some more, he did an exam. Then he offered a different procedure. The procedure consists of placing radioactive implants in or near the tumor twice a day for 5 days. They can give higher doses for shorter periods at the primary tumor site. This appealed to me because it was a shorter treatment time, affected the salivary glands less, but the procedure wasn’t offered at my medical facility. Dr. Akins said he’d call a friend that works with the procedure on the east coast and see what he recommended.
Sunday, January 17, 2010
Off To The Internet
In between the appointment on the 15th and my next appointment with hematology we both spend a lot of time doing research on the internet. There’s a lot of good, bad, mediocre, and down right crap out there. Be wery, wery careful. The biggest problem I had was finding information about my exact diagnosis. Every anecdotal case I came across was similar, but not exactly the same, or not similar at all, but had some good information. I was scared to death and couldn’t find enough good information to make an informed decision on which procedure to go with. I was afraid they were going to take too large a chunk out of my tongue and I wouldn’t be able to swallow, or my salivary glands were going to be destroyed by the radiation and I’d end up with serious dry mouth and swallowing problems. I was more afraid of the outcome, than I was for getting through whatever procedure I decided on.
Friday, January 15, 2010
So Now What Do We Do?
15 Jan 2010, Terry and I go to see Dr. Eller. Not as long of a wait in the waiting room this time. Dr. Eller sits us down and goes over the pathology report. 2.4 centimeter tumor, T2, N0, M0, squamous cell carcinoma (SCC), on the back of the tongue. Dr. Eller goes over what all that means and our heads spin. Next comes a lot of talk about possible procedures, surgery, chemo, radiation, combinations of each, radical neck disections, speech therapy, not being able to swallow, dry mouth, feeding tubes. Lots of notes that now don’t make any sense. Dr. Eller sets me up with appointments with hematology, radiation therapy, speech therapy and says we’ll meet again once I’ve talked to everyone else and gotten their sales pitch.
Saturday, January 9, 2010
What the heck is a panendoscopy?
My appointment on the 8th was for 10:15 am. I hadn’t eaten since 8:00 pm the night before. My wife and I got to the check-in desk at 9:45 am. They took us into another room, took my blood pressure (it was high), filled out some paper work and was given a pair of nice little booties and two hospital gowns (put one on frontwards, and one on backwards). We then went to a room, a regular hospital room only without a bed and waited. About an hour later, they came in and said they needed the room for someone coming out of surgery, could we please move to the waiting room. We moved. At 12:00 pm my wife went to check if we’d been forgotten. I had gotten a splitting headache, bordering on a migraine. At 12:15 they finally came and got me.
I was taken into the pre-surgery prep room and they proceeded to try and find a vein. That was a lost cause, but after trying several places they finally found one in my left arm. The anesthesiologist came in, assembled what he called the peace pipe and had me breath through it for a while, his assistant then gave me two shots . . . and then it was 4:30 in the afternoon.
I woke up with a sore throat and lots of confusion. It’s all pretty much a blur until the couch in the living room. My wife was trying to make me comfortable and I remember trying to eat some soup. I don’t care what anybody says, do not eat ice cream after a panendoscopy, you will regret it. If I remember right, water wasn’t much better. Then I took a Percocet and everything was good. When my head cleared the next day my wife went over the conversation she had with Dr. Eller after I came out of surgery. I was diagnosed with squamous cell carcinoma (SCC). The next 4 days were pretty much just sitting around trying to deal with a sore throat. Every day it got better.
I was taken into the pre-surgery prep room and they proceeded to try and find a vein. That was a lost cause, but after trying several places they finally found one in my left arm. The anesthesiologist came in, assembled what he called the peace pipe and had me breath through it for a while, his assistant then gave me two shots . . . and then it was 4:30 in the afternoon.
I woke up with a sore throat and lots of confusion. It’s all pretty much a blur until the couch in the living room. My wife was trying to make me comfortable and I remember trying to eat some soup. I don’t care what anybody says, do not eat ice cream after a panendoscopy, you will regret it. If I remember right, water wasn’t much better. Then I took a Percocet and everything was good. When my head cleared the next day my wife went over the conversation she had with Dr. Eller after I came out of surgery. I was diagnosed with squamous cell carcinoma (SCC). The next 4 days were pretty much just sitting around trying to deal with a sore throat. Every day it got better.
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