First Radiation Day
Hi all,
I spent a big portion of the day at the hospital with Chester today, some in the morning, and then again in the late afternoon. We will start with the morning. I got to his room about 9:30am with his latte in hand, and he was not there. I was told he was in physical therapy, and so I was able to observe this therapy for the first time. He was laying on his back, knees drawn up and doing exercises with the therapist. Its amazing to see him move his legs, and do exercises to strengthen the muscles. He was amazing the movement in his right leg. We got back to his room just in time for the speech therapist. I was on the phone talking to Chris for most of his session, but she basically just sits and chats with him. Of course, she is asking questions that give her the information she wants and puts him through his speech patterns just by talking. He showed her a letter he was writing, and she gave him 'homework,' editing his letter and inserting the small words he tends to leave out (the, an, a.. those kind of small words. Then came the neuropsychiatrist.... it was like a parade of the employees there almost. And when his half hour was over, here came Herb, the occupational therapist... to help Chester in the bathroom. He actually didn't help, Chester does it himself. He just needed to be there to 'spot' him. A friend, Pat Barber, was there so we went out to get sushi for lunch (and of course we shared with Chester). It was a great lunch. Jaime came in and he was going to go down with Chester for the 'dry run' of the radiation while I ran home to do a few things.
When I got back, it was to find out that the 'dry run' was the real thing. It kind of threw Chester for a loop for a bit. He had been worrying about it, and he was just not mentally ready for it. His take on it afterward was, 'well, one less day at the end of the 30 days.' The oncologist came in and talked to us about the chemotherapy he will start tomorrow morning. She wanted us all to be aware of what the side effects might be so we will know if something shows up to mention it to the nurses. Thinks like headaches, hair might fall out, changes with constipation or diarrhea or other stomach issues, and things like that. He will take this medicine for 30 days, then for 5 days in a row once a month for six months. This is a new drug that has been working really well. She also recommended that he go to UCSF (University of California of San Francisco) Brain Tumor Center for a second opinion. She said they are the best and know all the latest practices for his kind of tumor/cancer. She emphasized that the treatment he is getting there is the state of the art, but since the center for the whole country is in San Francisco, he should go there and have a consultation with a doctor who deals with brain tumors daily. So that is also planned for the future.
So he will be taking Temador (or something like that) plus an antibiotic to ward off PCP, a pneumonia that people on this drug tend to contract. Its given as a precaution. Oh, another side effect might be nausea, but she said that the drugs for that have so many side effects (like dizziness) that you need drugs for them.... and it starts a vicious cycle. So they tend to try to stay away from them.
Enough for now. I'm sure Jaime will correct anything I got wrong (feel free to do so Jaime). We have now moved into a new phase.... being there, allowing him to do for himself.... kind of out of the immediate crisis phase into the maintaining constant vigilance, a hands-off helping. I'm sure there will be other phases too. Keep the healing directed his way. He does believe he can beat this, and does not want to hear about statistics, etc., that might set up negative thoughts. He is sleeping well, and has sleeping pills if he needs them.
I did say enough. It is for now. My love to everyone.
Marilyn
I spent a big portion of the day at the hospital with Chester today, some in the morning, and then again in the late afternoon. We will start with the morning. I got to his room about 9:30am with his latte in hand, and he was not there. I was told he was in physical therapy, and so I was able to observe this therapy for the first time. He was laying on his back, knees drawn up and doing exercises with the therapist. Its amazing to see him move his legs, and do exercises to strengthen the muscles. He was amazing the movement in his right leg. We got back to his room just in time for the speech therapist. I was on the phone talking to Chris for most of his session, but she basically just sits and chats with him. Of course, she is asking questions that give her the information she wants and puts him through his speech patterns just by talking. He showed her a letter he was writing, and she gave him 'homework,' editing his letter and inserting the small words he tends to leave out (the, an, a.. those kind of small words. Then came the neuropsychiatrist.... it was like a parade of the employees there almost. And when his half hour was over, here came Herb, the occupational therapist... to help Chester in the bathroom. He actually didn't help, Chester does it himself. He just needed to be there to 'spot' him. A friend, Pat Barber, was there so we went out to get sushi for lunch (and of course we shared with Chester). It was a great lunch. Jaime came in and he was going to go down with Chester for the 'dry run' of the radiation while I ran home to do a few things.
When I got back, it was to find out that the 'dry run' was the real thing. It kind of threw Chester for a loop for a bit. He had been worrying about it, and he was just not mentally ready for it. His take on it afterward was, 'well, one less day at the end of the 30 days.' The oncologist came in and talked to us about the chemotherapy he will start tomorrow morning. She wanted us all to be aware of what the side effects might be so we will know if something shows up to mention it to the nurses. Thinks like headaches, hair might fall out, changes with constipation or diarrhea or other stomach issues, and things like that. He will take this medicine for 30 days, then for 5 days in a row once a month for six months. This is a new drug that has been working really well. She also recommended that he go to UCSF (University of California of San Francisco) Brain Tumor Center for a second opinion. She said they are the best and know all the latest practices for his kind of tumor/cancer. She emphasized that the treatment he is getting there is the state of the art, but since the center for the whole country is in San Francisco, he should go there and have a consultation with a doctor who deals with brain tumors daily. So that is also planned for the future.
So he will be taking Temador (or something like that) plus an antibiotic to ward off PCP, a pneumonia that people on this drug tend to contract. Its given as a precaution. Oh, another side effect might be nausea, but she said that the drugs for that have so many side effects (like dizziness) that you need drugs for them.... and it starts a vicious cycle. So they tend to try to stay away from them.
Enough for now. I'm sure Jaime will correct anything I got wrong (feel free to do so Jaime). We have now moved into a new phase.... being there, allowing him to do for himself.... kind of out of the immediate crisis phase into the maintaining constant vigilance, a hands-off helping. I'm sure there will be other phases too. Keep the healing directed his way. He does believe he can beat this, and does not want to hear about statistics, etc., that might set up negative thoughts. He is sleeping well, and has sleeping pills if he needs them.
I did say enough. It is for now. My love to everyone.
Marilyn
posted by Marilyn at 10:18 PM
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