Its been a pretty quiet week. Don has pretty much recuperated from the chemo and the radiation is just making him sleepy. He's been able to drive himself around and things are fairly normal considering. He spent too much time running around last weekend because it was the first weekend that he has felt reasonably well, but he did too much (bad patient won't listen) and by the end of the weekend he was beat again. But I can't say I blame him. He's feeling pretty unproductive.
So next Tuesday is chemo again and we start the whole process over. He will be in pretty bad shape for all of next week and probably into the weekend. then things will improve until the next (and Last!) chemo at the end of February. at least we are getting through it.
Also, the radiation dr says that he cancer is responding well. the slight swelling at the side of Don's neck is gone and some of the other things that were symptoms that we didn't recognize (tingling of his hand and foot on one side) are gone also. Throat is getting a little sore though and everything is tasting metallic to him. So he isn't wanting to eat much. Today is the day that they weigh him at radiation and he has lost additional weight so they are scolding him about not eating enough. So he will supplement with ensure and some other things. It's not that he couldn't still use a couple of additional pounds off, but they don't want it to happen while he is being treated.
I guess he should have more ice cream and milkshakes. Its a shame what you have to go through to be able to justify having a milkshake!
Thursday, January 31, 2013
Thursday, January 24, 2013
answers to questions
This morning when Don went to radiation he told the doctor about his experience with the fall the other night. The doctor said that it was dehydration and was a common issue because most people don't drink enough fluid and so they experience something like that when a time comes that they need to pay attention to it. That was a relief to hear. You just never know what these things mean when you haven't experienced them before.
Also the doctor said that the cancer was already responding to the treatment so that is excellent as well. Nice to get some good news for a change.
Don seems to be feeling better today as well. He is in the office and I could hear him laughing with a client. It was nice to hear that big laugh he has. He is still tired from the radiation but not sick from the chemo. He will have 2 weeks to rest up before the chemo knocks him down again.
it's quite a roller coaster ride. And I don't much like roller coasters myself. I discovered that at an inopportune time - Neil, a friend of mine, talked me into going on the roller coaster in Las Vegas at the New York casino. It's the one at the top of the roof. Well I figured out that I hated roller coasters right in the middle if the first full upside down loop. Unfortunately, there were a couple more loops to go before I could get off. I see some similarities.
Also the doctor said that the cancer was already responding to the treatment so that is excellent as well. Nice to get some good news for a change.
Don seems to be feeling better today as well. He is in the office and I could hear him laughing with a client. It was nice to hear that big laugh he has. He is still tired from the radiation but not sick from the chemo. He will have 2 weeks to rest up before the chemo knocks him down again.
it's quite a roller coaster ride. And I don't much like roller coasters myself. I discovered that at an inopportune time - Neil, a friend of mine, talked me into going on the roller coaster in Las Vegas at the New York casino. It's the one at the top of the roof. Well I figured out that I hated roller coasters right in the middle if the first full upside down loop. Unfortunately, there were a couple more loops to go before I could get off. I see some similarities.
Wednesday, January 23, 2013
every day a new event
Yesterday Don was somewhat back up and running and we expected today to be an even better one. However he got up in the middle of the night to go to the bathroom and he just found himself whirling out of control, ending up running head long into the chest of drawers in the dressing room and falling down. It was quite a crash. So we got him up and back to bed. The dizzyness seems to always be with him.
The emotions surrounding this whole experience run pretty high and it's hard to not get into it with him when he is angry at his situation and striking out. when these strange unexpected things happen they are frightening as well. everyone seems to have a different experience with all these drugs and machines and i guess we are having our different experience over the next 6 weeks or so.
The emotions surrounding this whole experience run pretty high and it's hard to not get into it with him when he is angry at his situation and striking out. when these strange unexpected things happen they are frightening as well. everyone seems to have a different experience with all these drugs and machines and i guess we are having our different experience over the next 6 weeks or so.
Sunday, January 20, 2013
The weekend
Yesterday started off pretty well but by mid day Don was having cramping in his abdomen. We thought it was a bathroom issue (or lack of) but we decided to call the on duty nurse at kaiser. They said it wasn't an emergency but we should go to the emergency room in case they wanted to do any testing or anything. So off we went.
They are pretty attentive when you get to emergency and you say cancer and chemo. They jump right up and get you inside away from the sick people. Especially with the flu going around. So anyway the upshot was they took blood, did an xray and ct scan and said that he wasn't stopped up but had a mild lower intestine inflammation. Not too sure how that happens but it has to do with bacteria. anyway they sent us home with two types of antibiotics. We ended up being there for 5 hours. I think it's a good thing we went because we don't want any infections in the next 6 weeks.
Today I think he is still suffering from the effects of the chemo not to mention the new medication. He's really tired and I've had to pry him out of prone position just to get the blood moving a bit. He's hoping to be improved by tomorrow enough to at least put in a part day at the office. Lucky it's nice and close so we don't have to do a commute as well.
Tomorrow its back to the routine, radiation every morning at 9:15 for about 10 minutes. At least no chemo for a few weeks. that should let him catch his breath a bit before the next bout.
They are pretty attentive when you get to emergency and you say cancer and chemo. They jump right up and get you inside away from the sick people. Especially with the flu going around. So anyway the upshot was they took blood, did an xray and ct scan and said that he wasn't stopped up but had a mild lower intestine inflammation. Not too sure how that happens but it has to do with bacteria. anyway they sent us home with two types of antibiotics. We ended up being there for 5 hours. I think it's a good thing we went because we don't want any infections in the next 6 weeks.
Today I think he is still suffering from the effects of the chemo not to mention the new medication. He's really tired and I've had to pry him out of prone position just to get the blood moving a bit. He's hoping to be improved by tomorrow enough to at least put in a part day at the office. Lucky it's nice and close so we don't have to do a commute as well.
Tomorrow its back to the routine, radiation every morning at 9:15 for about 10 minutes. At least no chemo for a few weeks. that should let him catch his breath a bit before the next bout.
Thursday, January 17, 2013
chemo recuperation
The chemo laid out Don pretty hard yesterday. I guess running poison through your system doesn't feel too good. He's a bit better today but still not his usual springy self. They weighed him today at radiation and he has actually gained two pounds. They are watching to make sure he doesn't lose weight.
Okay, lets see what they recommend for his diet - the instructions say ice cream, fruit pies, pudding, milk shakes, fruit smoothies, anything with lots of calories and put whipped cream on it to top it off. He doesn't see it right now, but it sounds like that is some kind of upside. however, no alcohol means that he is cut off from wine and cosmos. Uh oh. I wondered why some of our friends have stopped coming around...
So far the radiation isn't showing up on his skin as red and irritated. But we are going to get the creams they recommended anyway - we have several weeks to go yet.
So that's pretty much the scoop for now. chemo won't happen again for several weeks so that's good. And then only one last time at the end - on his birthday.
Okay, lets see what they recommend for his diet - the instructions say ice cream, fruit pies, pudding, milk shakes, fruit smoothies, anything with lots of calories and put whipped cream on it to top it off. He doesn't see it right now, but it sounds like that is some kind of upside. however, no alcohol means that he is cut off from wine and cosmos. Uh oh. I wondered why some of our friends have stopped coming around...
So far the radiation isn't showing up on his skin as red and irritated. But we are going to get the creams they recommended anyway - we have several weeks to go yet.
So that's pretty much the scoop for now. chemo won't happen again for several weeks so that's good. And then only one last time at the end - on his birthday.
Tuesday, January 15, 2013
Well, today is Tuesday and it was our first day with this process. 7am was the radiation. They had built him a "mask" to make sure the radiation was just in the right pinpoint spot. So every day when he goes there they put this mask on him and bolt him to the table. I have to say, being somewhat claustrophobic, it doesn't look like something I would be able to do. At least not without excellent drugs! But our champ did great. the photo below shows Don laying down with the mask over his face and the radiation laser at x marks the spot. notice the beam coming from the wall behind him. there is one on each side. Doesnt look like much fun, does it?
Then we went to Zion for the chemo treatment. So that means that Don spent the day in a barcolounger watching TV, reading, and whatever else (napping I suspect). He had everything but the bon bons. All kidding aside, it was a nice place and the nurses were great. It seems to be a comfortable atmosphere. Today there was someone there who had their last chemo treatment and they had him ring a gong and everyone clapped. That was pretty great. Needless to say, he had a big grin when he left.
Once I got Don settled into the barcolounger with all his stuff around where he could reach it, I left and went back to work. then went back to bring him lunch - home made pasta with bolognese sauce. (to go with the bon bons). After lunch our friend Mike Brumley came to visit Don and I went back to work. Now he's home and going to take a nap. It was a tough day but now we are starting the process - the sooner it starts the sooner it will be over!
Then we went to Zion for the chemo treatment. So that means that Don spent the day in a barcolounger watching TV, reading, and whatever else (napping I suspect). He had everything but the bon bons. All kidding aside, it was a nice place and the nurses were great. It seems to be a comfortable atmosphere. Today there was someone there who had their last chemo treatment and they had him ring a gong and everyone clapped. That was pretty great. Needless to say, he had a big grin when he left.
Once I got Don settled into the barcolounger with all his stuff around where he could reach it, I left and went back to work. then went back to bring him lunch - home made pasta with bolognese sauce. (to go with the bon bons). After lunch our friend Mike Brumley came to visit Don and I went back to work. Now he's home and going to take a nap. It was a tough day but now we are starting the process - the sooner it starts the sooner it will be over!
Sunday, January 13, 2013
catching everyone up
This blog is being written at our friends' request so they can keep track of Don's progress without having to call all the time to check in. This will save me lots of time fielding calls from all of Don's fans, as they reminded me. It certainly makes it easier not to repeat the same stories over again. So here we go.
For those of you who are just coming into the story, I'll give some background. Just before Christmas Don was diagnosed with oropharyngeal cancer. I'll give you the link for the medical info: link to oropharyngeal cancer info. First thing to know - it is totally treatable. That is all I was interested in hearing at the beginning.
As some of you have experienced, when you get the phone call that the Dr says "cancer" you don't hear anything else he says. So you need to call back to find out what the deal is. The radiation oncologyst said that it is totally curable but the treatment is terrible. So that is what we have to look forward to.
There were some preliminary steps to this before the radiation and chemo start. First there was a feeding tube that had to be inserted in Don's stomach in case the treatment made him unable to swallow. The Dr said that it isn't always necessary but you don't want to be doing it in the middle of treatment if his throat gets too sore to swallow. Not pleasant to be looking a bit like a pull toy that goes "ouch" when you pull at the tube.
Next was some dental surgery to remove teeth that would be affected by the radiation. that was a tough one for Don but you can't tell the difference when you look at him, so that's good. I think he thought he was going to be taking on the hillbilly look, but no. So besides the obvious discomfort of having that done, so far so good. But with sore gums he is getting pretty sick of soup.
The latest insult was that they had to design a "mask" for the radiation, to keep it pinpointed in the same places, which is both sides of Don's neck. He said that it was the worst experience because they clamp this thing to your head and neck to mold it into place. He said it was really claustrophobic. They would have had to invent something new for me if I had to do it because I would have completely freaked out.
So this coming week we are on to the real stuff - chemo and radiation on Tuesday. The chemo treatment will happen three times - once at the beginning, once in the middle and again at the end. the radiation process is supposed to run about 6 weeks and Don has to go in every day for about 10 minutes to have it done. 5 days a week. The chemo process is 7 hours each time and they say to bring things to do and eat because you are just sitting in the chair with the TV on, and you know what daytime TV can be like! Our friends are volunteering to go entertain during that period. Each has their own idea of what is entertaining - Mike Brumley had volunteered to go in this first time and read Don the tax codes....
So that is what is happening so far. We have some up days and some down days when Don sees this all stretching out before him. But I guess you can't get it overwith until you start it. I know, easy for me to say...
For those of you who are just coming into the story, I'll give some background. Just before Christmas Don was diagnosed with oropharyngeal cancer. I'll give you the link for the medical info: link to oropharyngeal cancer info. First thing to know - it is totally treatable. That is all I was interested in hearing at the beginning.
As some of you have experienced, when you get the phone call that the Dr says "cancer" you don't hear anything else he says. So you need to call back to find out what the deal is. The radiation oncologyst said that it is totally curable but the treatment is terrible. So that is what we have to look forward to.
There were some preliminary steps to this before the radiation and chemo start. First there was a feeding tube that had to be inserted in Don's stomach in case the treatment made him unable to swallow. The Dr said that it isn't always necessary but you don't want to be doing it in the middle of treatment if his throat gets too sore to swallow. Not pleasant to be looking a bit like a pull toy that goes "ouch" when you pull at the tube.
Next was some dental surgery to remove teeth that would be affected by the radiation. that was a tough one for Don but you can't tell the difference when you look at him, so that's good. I think he thought he was going to be taking on the hillbilly look, but no. So besides the obvious discomfort of having that done, so far so good. But with sore gums he is getting pretty sick of soup.
The latest insult was that they had to design a "mask" for the radiation, to keep it pinpointed in the same places, which is both sides of Don's neck. He said that it was the worst experience because they clamp this thing to your head and neck to mold it into place. He said it was really claustrophobic. They would have had to invent something new for me if I had to do it because I would have completely freaked out.
So this coming week we are on to the real stuff - chemo and radiation on Tuesday. The chemo treatment will happen three times - once at the beginning, once in the middle and again at the end. the radiation process is supposed to run about 6 weeks and Don has to go in every day for about 10 minutes to have it done. 5 days a week. The chemo process is 7 hours each time and they say to bring things to do and eat because you are just sitting in the chair with the TV on, and you know what daytime TV can be like! Our friends are volunteering to go entertain during that period. Each has their own idea of what is entertaining - Mike Brumley had volunteered to go in this first time and read Don the tax codes....
So that is what is happening so far. We have some up days and some down days when Don sees this all stretching out before him. But I guess you can't get it overwith until you start it. I know, easy for me to say...
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