On Friday I had my 8th radiation treatment. That puts me a 22% complete. I also got the drug to protect the salivary glands. That didn't go so well. This time my blood pressure dropped a bit though it did come back. In general as the week went on I found that the radiation had a bigger and bigger impact. Now I get 2 days off! Yippee! I also changed my time on Monday to a bit later in the day and I think I may see if I can make that permanent. The mornings are good in general so if I have the radiation in the afternoon it would give the the entire morning to get things done.
One thing I am noticing now is that it feels like the tumors in the neck are smaller. I don't know if its just my imagination but they definitely feel smaller. The radiation oncologist said they would do another CT Scan about halfway in to adjust the treatment. I may ask on Monday if they can do it earlier. The one downside to radiation is that it does cause some permanent long term side effects. My thought is that we should look to adjust the treatment as needed if the tumors are shrinking to help minimize those side effects. Then again it could be my imagination and the tumors are not shrinking that much yet. They told me I probably wouldn't notice a change until 2 weeks but I started to notice it early this week. Of course the main tumor in the nasal pharyngeal area I really can't tell the size of. I do know that after a few days the sinus pressure and headaches that got all of this started went away.
Yesterday I was pretty wiped out after the radiation and crashed most of the day. Around 5PM I started to notice I was warm and checked my temperature. Sure enough I was at 101. The medical oncologist wanted to know about anything over 100 so we called. They called back and it was time for a road trip to the hospital to have some blood work done. We had to scramble a bit because both kids were out at activities. Fortunately Sue made a calling list and we were able to make sure things were taken care of. Things went pretty quick at the hospital. We had to wait around for the test results and the doctor to call back but we weren't there more than an hour so it worked out OK. My blood counts are all still good though that will change I am told. They didn't notice anything else so they sent me home to see how the weekend goes. The fever did hit a high of 102.7 but with Motrin it comes right down. Fortunately we meet with the medical oncologist on Monday to review where things are at.
This weekend I am laying low. One thing I have done is started re-reading the Patrick O'Brien Aubury / Mauturn series of books. Its 20 books written in the language of the early 19th century about the career of a officer in the British Navy. The movie Master and Commander is based on these books. (A great movie by the way.) It took awhile to really understand the language and nautical terms in the books. Eventually I purchased a companion dictionary. Its been a few years since I finished the series but now that I go back and start to read them again I find I have a much better understanding of what it going on. The books are short, less than 500 pages, and easy to pick up and put down. That makes it great reading to take with me to appointments. The series is an acquired taste but if you liked the movie and like to read I recommend them. Fortunately I have all 20 books here so I can just grab the next one as I go. I think they now sell the books in combined volumes with multiple books bound together. In some ways that makes sense. These books have often been refereed to as one long book with each book being a separate chapter.
And one last thing from the cruel irony column. Some of you may know that I am a bit of an espresso addict. I have my own home espresso machine complete with the proper type of grinder to go with it. (For those of you that don't know the grinder and coffee roast is one of the most important things in making espresso.) There is a local coffee roaster that has a few espresso bars in town that I get my coffee beans from. Its a great place but about a 15 minute drive away. While under treatments I have given up espresso for a wide variety of reasons. So of course what happens? The local coffee roaster just opened an espresso bar 2 minutes from my house. Just one of life's cruel little ironies. :-) Seriously I am OK with it and also know it will be one of the first places I visit when this is all done.
Saturday, November 10, 2007
Wednesday, November 7, 2007
1st Week Report
Its been just one week since I started treatment. On the first day I had the chemo and radiation. Since then I have completed one week of the radiation treatment. The chemo hit me pretty hard the first day and has been causing some nausea. Yesterday I called the medical oncologist office and they switched me to a different drug called Zofran. (Actually the generic version)
One of the problems I have been having is getting enough calories. At first it wasn't bad but with the nausea and my taste starting to drop off it is becoming more of a challenge. I spoke with the nurse at the radiation oncologist office and the goal is to get at least 2,000 calories or more like 2,400. It is totally counter intuitive to what I have been used to. When I look at the frozen dinners at the store I look for the highest calorie count in the smallest package.
Its hard to describe what radiation treatment is like. Getting the treatment is no big deal. It takes 20 minutes or so. I am almost always in and out quickly and the people there are great. It seems that I am fine right after I get zapped but start to really fade about 5 - 6 hours afterwards and then need a few hours of down time. The next morning is when I seem to be the most productive. It appears that the body takes the biggest hit from the radiation late in the afternoon and then tries to start to recover from it overnight. Of course after each treatment the effects get progressively stronger.
Next week they are installing the PEG tube. I spoke to the radiation oncologist nurse and she was able to explain some of the details. Apparently there are two home health aide companies that they use locally and they are responsible for supplying feedings and help to support you with the tube. The nice thing is that they are on call 7x24 if needed and deliver to your house.
One thing we are doing is getting everything centralized on one floor. We just ordered a futon for my office and this will let me stay just on the first floor for the most part. It helps because the food, bathroom and just an area to wander around in if I am up at night is right there without going up and down stairs all the time and waking up everyone else in the house. I was crashing on the couch in the family room but long term that would be too disruptive to the kids. We had been thinking of getting a futon for the basement anyway so when this is done it will go down there.
One of the problems I have been having is getting enough calories. At first it wasn't bad but with the nausea and my taste starting to drop off it is becoming more of a challenge. I spoke with the nurse at the radiation oncologist office and the goal is to get at least 2,000 calories or more like 2,400. It is totally counter intuitive to what I have been used to. When I look at the frozen dinners at the store I look for the highest calorie count in the smallest package.
Its hard to describe what radiation treatment is like. Getting the treatment is no big deal. It takes 20 minutes or so. I am almost always in and out quickly and the people there are great. It seems that I am fine right after I get zapped but start to really fade about 5 - 6 hours afterwards and then need a few hours of down time. The next morning is when I seem to be the most productive. It appears that the body takes the biggest hit from the radiation late in the afternoon and then tries to start to recover from it overnight. Of course after each treatment the effects get progressively stronger.
Next week they are installing the PEG tube. I spoke to the radiation oncologist nurse and she was able to explain some of the details. Apparently there are two home health aide companies that they use locally and they are responsible for supplying feedings and help to support you with the tube. The nice thing is that they are on call 7x24 if needed and deliver to your house.
One thing we are doing is getting everything centralized on one floor. We just ordered a futon for my office and this will let me stay just on the first floor for the most part. It helps because the food, bathroom and just an area to wander around in if I am up at night is right there without going up and down stairs all the time and waking up everyone else in the house. I was crashing on the couch in the family room but long term that would be too disruptive to the kids. We had been thinking of getting a futon for the basement anyway so when this is done it will go down there.
Sunday, November 4, 2007
Day 5: A better day
Its Sunday to I have two days off from treatment. I definitely feel better today and was able to get some work done. I am not as fatigued and for the most part I don't notice my stomach. Its hard to figure out how this week is going to play out. Last week we started with a bang on Wednesday with both the chemotherapy and the radiation. A definite double whammy and it was difficult to figure out what was causing what symptoms. My guess is the nausea and stomach feelings were from the Cisplatin. The swelling in the throat was clearly from the radiation. That has gone down in the last two days but next week I get 5 daily treatments in a row. My guess is that I will start to feel it on Monday and then build to Friday but I won't recover as much over the weekend as I did this last weekend. Fortunately I don't have another chemo for 2 and a half weeks. My next chemo is scheduled for the Tuesday before Thanksgiving. Its a bit of a bummer to have it then but at the same time it gives me some more down time to recover from it.
Tomorrow I have to push the GI specialist about getting the peg tube installed. I am not looking forward to it but it is going to be a critical part of keeping my healthy to fight the cancer cells. I did some research on why radiation causes fatigue. There doesn't seem to be a strong agreement but one opinion is that the metabolic activity required to repair the damaged cells causes part of the energy drain. Eating properly will go a long way to helping that. From what I have read a feeding tube is really more of a psychological issue than anything else. I am not sure I agree with that but they do over 200,000 of these a year in the country many times for cancer patients. I view this as a necessary condition in the battle. The problem is that it appears to be up to me to get it scheduled. I called the GI and tried to get with the scheduler twice but didn't get a call back. Tomorrow I will ask at the radiation oncologist office to see if they can get it going. They setup the original appointment. Ideally I would like to shoot for Thursday. It has advantages personally and its about the time when I won't be able to get much done anyway.
One other thing I am finding is that I need to stake out a good position to rest in. Lying down on the coach or the bed too much can cause poor sleep hygiene and isn't very useful. You lie there with your eyes closed but don't really sleep.
I probably won't continue posting every day. Just once or twice a week or when something significant happens like my next chemo.
Tomorrow I have to push the GI specialist about getting the peg tube installed. I am not looking forward to it but it is going to be a critical part of keeping my healthy to fight the cancer cells. I did some research on why radiation causes fatigue. There doesn't seem to be a strong agreement but one opinion is that the metabolic activity required to repair the damaged cells causes part of the energy drain. Eating properly will go a long way to helping that. From what I have read a feeding tube is really more of a psychological issue than anything else. I am not sure I agree with that but they do over 200,000 of these a year in the country many times for cancer patients. I view this as a necessary condition in the battle. The problem is that it appears to be up to me to get it scheduled. I called the GI and tried to get with the scheduler twice but didn't get a call back. Tomorrow I will ask at the radiation oncologist office to see if they can get it going. They setup the original appointment. Ideally I would like to shoot for Thursday. It has advantages personally and its about the time when I won't be able to get much done anyway.
One other thing I am finding is that I need to stake out a good position to rest in. Lying down on the coach or the bed too much can cause poor sleep hygiene and isn't very useful. You lie there with your eyes closed but don't really sleep.
I probably won't continue posting every day. Just once or twice a week or when something significant happens like my next chemo.
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