OK. So that's done. Six more weeks to go.
The good news is I'm really not seeing much in the way of side effects yet, though I guess I would have been surprised if I did.
I've been using a combination of some cream/lotion the radiation office gave me and some that Eadie sent me that's really outstanding. There are two...a rosehip oil and a night cream with a heavy emphasis on good butters and rosehips. Not sure whether or not it's keeping the radiation burns at bay, but it is very soothing and I'm using something three times a day. So far, so good. I'll be keeping that up during the next six weeks.
Drinking lots of water to help with dry mouth which I know is going to get much worse as treatment goes on. And using a prescription fluoride twice a day on my upper teeth because the salivary glands are going to go bye bye and when they do, I'll be much more prone to tooth decay.
And that's really it this week. Not a whole lot of change going on, though I suspect the next week or two will see side effects start in.
Everyone have a wonderful weekend, and I'll be blogging an update next week.
Friday, February 29, 2008
Monday, February 25, 2008
The Roasting and Toasting Begins....
The start of radiation was today. Looks like the actual treatment may take about 10-15 minutes. A tad longer on the days they take x-rays, which is apparently once a week. My assumption is they're double checking their radiation beam calibrations, but I didn't ask. Today was 20 minutes with two x-rays and treatment, so I expect tomorrow to be shorter.
I asked the tech when he thought I could expect to see some side effects...knowing each person is different, of course. He said pretty much two weeks. Some people see it in three and some in one. Probably the earliest I'd experience anything would be by this Friday and it'd probably just be a dry or sore throat. Since I'm already a big water drinker, I'm not sure how much of this I'll see then, but I know I'll experience it by the time it's all said and done.
I did warn the receptionist on the way out that if in three weeks my sunny disposition has turned to shit, she can bet it will be because I'm feeling the effects.
So that's that for the radiation update for now.
I'm hoping to get a prescription for fluoride so I can start my daily fluoride treatments. With luck that will be tomorrow. I know that's going to be a daily thing, but I'm not sure if we're looking at daily for the rest of my life or daily while the treatment and dry mouth side effects are going on. There seems to be some question about that, but I'll get an answer in the next few days, I'm sure.
Now for the really excellent news.
We finally got the bill for my hospital stay back in December. The one where I was in ICU for two days and then a regular room for another two. The hospital is waiving the charges. That is GREAT news because I could just see writing the hospital a check for $10/month for the rest of my life.
That means that right now we're paying the ENT (and he reduced his rate unbelievably) and the anesthesiologists who did the original tongue surgery and then the tooth extraction. We'll have radiation bills, of course, and chemo payments if that ends up being done. But at least the hospital bill isn't hanging over our heads and that is a HUGE relief.
Anyway, I'm cooking up a storm over here since I made the mistake of cleaning out/rearranging our big freezer late last week. Since I'd skipped my biannual expedition last fall, I unfortunately found stuff that I really needed to cook up. So rather than spending a rather leisurely last weekend before radiation, I was madly making soups and stocks. Fortunately that should end tomorrow or Wednesday and Randall will have a few more dishes to add to his freezer for his meals when I'm out of commission.
I'll probably not get another update out here until later this week or maybe the weekend. But all the news from this end is good right now and I hope it stays that way for some time.
I asked the tech when he thought I could expect to see some side effects...knowing each person is different, of course. He said pretty much two weeks. Some people see it in three and some in one. Probably the earliest I'd experience anything would be by this Friday and it'd probably just be a dry or sore throat. Since I'm already a big water drinker, I'm not sure how much of this I'll see then, but I know I'll experience it by the time it's all said and done.
I did warn the receptionist on the way out that if in three weeks my sunny disposition has turned to shit, she can bet it will be because I'm feeling the effects.
So that's that for the radiation update for now.
I'm hoping to get a prescription for fluoride so I can start my daily fluoride treatments. With luck that will be tomorrow. I know that's going to be a daily thing, but I'm not sure if we're looking at daily for the rest of my life or daily while the treatment and dry mouth side effects are going on. There seems to be some question about that, but I'll get an answer in the next few days, I'm sure.
Now for the really excellent news.
We finally got the bill for my hospital stay back in December. The one where I was in ICU for two days and then a regular room for another two. The hospital is waiving the charges. That is GREAT news because I could just see writing the hospital a check for $10/month for the rest of my life.
That means that right now we're paying the ENT (and he reduced his rate unbelievably) and the anesthesiologists who did the original tongue surgery and then the tooth extraction. We'll have radiation bills, of course, and chemo payments if that ends up being done. But at least the hospital bill isn't hanging over our heads and that is a HUGE relief.
Anyway, I'm cooking up a storm over here since I made the mistake of cleaning out/rearranging our big freezer late last week. Since I'd skipped my biannual expedition last fall, I unfortunately found stuff that I really needed to cook up. So rather than spending a rather leisurely last weekend before radiation, I was madly making soups and stocks. Fortunately that should end tomorrow or Wednesday and Randall will have a few more dishes to add to his freezer for his meals when I'm out of commission.
I'll probably not get another update out here until later this week or maybe the weekend. But all the news from this end is good right now and I hope it stays that way for some time.
Thursday, February 21, 2008
Freddy may wear a mask...
but I bet he doesn't get strapped to a table and shot with x-rays. :)
Had two appointments today. The first was a follow-up with Dr. Lehr and the second was my dry run with the mask in preparation for my radiation.
Dr. Lehr is very happy with the way things are healing. He asked again about the radiation and we told him we were leaving after we saw him to head to my final before-radiation appointment with Dr. Mundy. He wants to see me again in a month for a follow-up, which is pretty much what was expected. I mentioned that I have a seriously nasty taste in my mouth that gets worse as the day goes on, and he really didn't have much to say there, so we stopped by Drug Emporium on the way home and picked up some Altoids and a mouthwash. I suspect my mouth is just reacting to all the trauma over the last couple of months. Since Dr. Lehr wasn't concerned, I"m not either. :) And his nurse said my attitude was absolutely incredible. I figure that's going to make it easier for all of us, so why mope?
After we left there, we went down and I got to do the dry run for the radiation. Basically that's where the mask that was made on Monday is put on and they take some x-rays and get the table and machine calibrated for the individual treatment. Pretty boring stuff, actually. The only thing I can say is that I'm really annoyed that as soon as the mask is on and my arms are immobilized my nose itches. I'm sure there's some reason for that, but I just seriously don't appreciate the timing.
Saw Dr. Mundy after the dry run. This cancer is Stage 3 because its in the lymph nodes. I guess I knew that (and it is standard for cancer staging), but it still shook me a bit. Also, he wants me to talk to the chemo doctor, which is pretty much what we all expected. Now that Dr. Mundy is involved, I think we'll get some where on that. No word on when that will happen, but I suspect fairly soon. Anyway, those two things gave me another "Oh shit." moment. Fortunately I don't have many of those, and when I do they generally only last 5-10 minutes.
There is actually some really good news out of all of this. Dr. Mundy put the chance of this cancer returning after radiation at about 25-30%. That is actually much better than what Dr. Lehr gave us (50/50) a month ago. Also, if it does reoccur, it is almost always local. And that's a HUGE relief. Like I told him, I didn't want to wake up one morning and find out it had come back in my big toe. That apparently isn't something that happens with this.
Also, he said that when you hear people say that if you're cancer free after 5 years, you're generally free from that type for good? Well, with this, it's one of the rare cancers where it's almost always true. So that is excellent news. I told him that, after all, I planned to live forever and would be really hacked off if something interfered with that. LOL
So that's where we are. Beginning Monday at 1:45, I start my daily roasting routine. I've no idea what all will happen because each person reacts to radiation differently. I have however, put the spare sheets on the guest bed and we've got a new chair in there for me if I need some place to sit up at night (or if I'm just really worn out but don't want to lay down). I'm going to run around the house with a feather duster this weekend and get a few other things done in preparation.
And, of course, I'll blog as I can to keep folks updated. As much as possible, I'm going to try to keep to a normal routine. I'll have to make adjustments I know, but I'd like to keep life as normal as I can for as long as I can.
Had two appointments today. The first was a follow-up with Dr. Lehr and the second was my dry run with the mask in preparation for my radiation.
Dr. Lehr is very happy with the way things are healing. He asked again about the radiation and we told him we were leaving after we saw him to head to my final before-radiation appointment with Dr. Mundy. He wants to see me again in a month for a follow-up, which is pretty much what was expected. I mentioned that I have a seriously nasty taste in my mouth that gets worse as the day goes on, and he really didn't have much to say there, so we stopped by Drug Emporium on the way home and picked up some Altoids and a mouthwash. I suspect my mouth is just reacting to all the trauma over the last couple of months. Since Dr. Lehr wasn't concerned, I"m not either. :) And his nurse said my attitude was absolutely incredible. I figure that's going to make it easier for all of us, so why mope?
After we left there, we went down and I got to do the dry run for the radiation. Basically that's where the mask that was made on Monday is put on and they take some x-rays and get the table and machine calibrated for the individual treatment. Pretty boring stuff, actually. The only thing I can say is that I'm really annoyed that as soon as the mask is on and my arms are immobilized my nose itches. I'm sure there's some reason for that, but I just seriously don't appreciate the timing.
Saw Dr. Mundy after the dry run. This cancer is Stage 3 because its in the lymph nodes. I guess I knew that (and it is standard for cancer staging), but it still shook me a bit. Also, he wants me to talk to the chemo doctor, which is pretty much what we all expected. Now that Dr. Mundy is involved, I think we'll get some where on that. No word on when that will happen, but I suspect fairly soon. Anyway, those two things gave me another "Oh shit." moment. Fortunately I don't have many of those, and when I do they generally only last 5-10 minutes.
There is actually some really good news out of all of this. Dr. Mundy put the chance of this cancer returning after radiation at about 25-30%. That is actually much better than what Dr. Lehr gave us (50/50) a month ago. Also, if it does reoccur, it is almost always local. And that's a HUGE relief. Like I told him, I didn't want to wake up one morning and find out it had come back in my big toe. That apparently isn't something that happens with this.
Also, he said that when you hear people say that if you're cancer free after 5 years, you're generally free from that type for good? Well, with this, it's one of the rare cancers where it's almost always true. So that is excellent news. I told him that, after all, I planned to live forever and would be really hacked off if something interfered with that. LOL
So that's where we are. Beginning Monday at 1:45, I start my daily roasting routine. I've no idea what all will happen because each person reacts to radiation differently. I have however, put the spare sheets on the guest bed and we've got a new chair in there for me if I need some place to sit up at night (or if I'm just really worn out but don't want to lay down). I'm going to run around the house with a feather duster this weekend and get a few other things done in preparation.
And, of course, I'll blog as I can to keep folks updated. As much as possible, I'm going to try to keep to a normal routine. I'll have to make adjustments I know, but I'd like to keep life as normal as I can for as long as I can.
Monday, February 18, 2008
Freddy Krueger Look-A-Like
Well...Freddy in Mesh. LOL
I know this is my first update since the end of January, but things have been very quiet for a few weeks and that's about to change.
I went in today for my first official radiation appointment. Got me a mask made. A mesh mask. This is step one in the process of radiation treatment. I won't go into the details, but essentially, a mesh cloth is placed over your face and molded to it. That is what you wear during the actual radiation. Once the mask is made (and it's a very quick process...five minutes, tops), you're wheeled up for a CT scan that will then be used by the radiation oncologist to map out the treatment areas.
And that is what we'll be doing on Thursday afternoon. We'll be shown by Dr. Mundy what will be done, set up a permanent time for our appointments and then we'll start radiation treatments every weekday for the next seven weeks...that should start on Monday, February 25. We're also going to hopefully get in to see a chemotherapy oncologist. That's been held up because of money and the clinic's inability to work with us on that. We're hoping that with Dr. Mundy's personal involvement, something will give on that front and we can at least get in long enough to see if chemo is even needed. I'm also going to have to have a fluoride tray made for my upper teeth so I can use it every day for the rest of my life for about 10 minutes or so a day. That's a direct reflection on my salivary glands being killed off pretty much permanently with the radiation.
So, on Thursday, I've got the appointment at 2 pm to do the radiation scheduling dance. Before that at 1:15, I see Dr. Lehr for a quick follow-up (it's been a month since my last one). And who knows between today and Thursday what is going to happen with the chemotherapy stuff and the oral surgeon (fluoride tray).
This week looks to be very busy. And next week, well, that's when the real trial starts. And it will be a trial. No doubt about that. I'm going to include a link to a diary that a woman in the UK kept while she was going through radiation for the same type of cancer (squamous cell carcinoma) I have, though hers wasn't oral and the radiation was further down on the neck than anything I'll go through. While there's no guarantee that I'll have every response she did, I will say that I, too, am very fair complected and haven't sun bathed in over 20 years. So, that has to be remembered. Randall and I both are prepared for my reactions to be bad. Just how bad, we don't know and can't until the time, but I'd rather be pleasantly surprised by my body's response than the other way around.
Since Thursday is going to be so busy, I may not get an update posted until Friday. And starting on Monday, I'll blog, hopefully, a bit every couple of days if I can.
Diary link: http://www.fashion-era.com/Radiotherapy_1.htm
I know this is my first update since the end of January, but things have been very quiet for a few weeks and that's about to change.
I went in today for my first official radiation appointment. Got me a mask made. A mesh mask. This is step one in the process of radiation treatment. I won't go into the details, but essentially, a mesh cloth is placed over your face and molded to it. That is what you wear during the actual radiation. Once the mask is made (and it's a very quick process...five minutes, tops), you're wheeled up for a CT scan that will then be used by the radiation oncologist to map out the treatment areas.
And that is what we'll be doing on Thursday afternoon. We'll be shown by Dr. Mundy what will be done, set up a permanent time for our appointments and then we'll start radiation treatments every weekday for the next seven weeks...that should start on Monday, February 25. We're also going to hopefully get in to see a chemotherapy oncologist. That's been held up because of money and the clinic's inability to work with us on that. We're hoping that with Dr. Mundy's personal involvement, something will give on that front and we can at least get in long enough to see if chemo is even needed. I'm also going to have to have a fluoride tray made for my upper teeth so I can use it every day for the rest of my life for about 10 minutes or so a day. That's a direct reflection on my salivary glands being killed off pretty much permanently with the radiation.
So, on Thursday, I've got the appointment at 2 pm to do the radiation scheduling dance. Before that at 1:15, I see Dr. Lehr for a quick follow-up (it's been a month since my last one). And who knows between today and Thursday what is going to happen with the chemotherapy stuff and the oral surgeon (fluoride tray).
This week looks to be very busy. And next week, well, that's when the real trial starts. And it will be a trial. No doubt about that. I'm going to include a link to a diary that a woman in the UK kept while she was going through radiation for the same type of cancer (squamous cell carcinoma) I have, though hers wasn't oral and the radiation was further down on the neck than anything I'll go through. While there's no guarantee that I'll have every response she did, I will say that I, too, am very fair complected and haven't sun bathed in over 20 years. So, that has to be remembered. Randall and I both are prepared for my reactions to be bad. Just how bad, we don't know and can't until the time, but I'd rather be pleasantly surprised by my body's response than the other way around.
Since Thursday is going to be so busy, I may not get an update posted until Friday. And starting on Monday, I'll blog, hopefully, a bit every couple of days if I can.
Diary link: http://www.fashion-era.com/Radiotherapy_1.htm
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