Day 10
Yesterday seemed to be John's worst day since the transplant, although I have seen him worse off during his prior hospitalizations. A mild fever returned and he coughed up blood in the night, which sounds worse than it was.
In trying to adjust his pain medication, they added a new drug that caused him to be confused and anxious, but did nothing for the pain. By the end of the day, we got that out of his system and a newer pain and nausea medication in him. "Zofran" is the drug that he took when he started this round of chemotherapy. It is hard to believe, but it costs about $100 a pill (or in this case a shot). He hasn't eaten anything in about a week now, but still throws up when his medication levels drop, which happened during the evening. Despite all that and other ickier things, the fact that all this is a part of a transplant makes it easier to handle. This is, after all, treatment to make him better. Also, the confidence and attention that comes from the staff gives John an added boost.
This morning, Saturday, John seemed better. He sat in a chair, read and talked some. When he dozed, he would see and hear things, but that is due to the drugs. Interestingly, he receives a cognitive test almost every day as a part of a study going on. The whole thing takes about 10 minutes and starts with "Do you know your name." They ask him to repeat numbers in sequence and backwards and at the end ask if he remembers the first set of numbers. (Yes, he did better than me). They also ask questions to see if he is seeing or hearing things, is in pain and if he thinks someone is trying to hurt him. (It's not paranoia if they really are out to get you.) A study was published yesterday that followed 400 sets of twins in Sweden in which one sibling had come down with cancer. The results showed that, either due to treatments or cancer, the twin with cancer tended to develop more and earlier mental impairment. That would be a small tradeoff if it is true in John's case.
Tomorrow will be John's last shot to slow the engraftment process. After that, he should start to improve and feel better, unless acute "graft vs. host disease" sets in. He shows no signs of that at this point, but for those in whom it does occur, the new immune system attacks its new host organ by organ. That would be a valid reason to be paranoid. His various blood counts have remained supressed and low now for a week, but all the doctors are worried about is treating his various side effects.
Laura (my sister) and Mike (her husband) came to town yesterday to visit us, some friends and to ride bicycles around town. We had lunch with them today and the visited with John in the hospital. They apparently have donated to John's "Vespa fund" (please don't), because he awarded them a copy of his comic book.
We sat and talked about how John will be living with someone elses blood and immune system and whether that constituted justifiable schizophrenia. He seemed to really enjoy their visit and perked up for quite a while.
This hospital and staff is great, but the one thing they couldn't seem to find or provide has been a razor to cut a patient's hair when it begins to fall out. After asking every day, I bought one at the drug store, cleaned it with alcohol and shaved John's head. Afterwards, I donated it to the University of Washington Medical Center in John's name. Now he looks more like my son.
In trying to adjust his pain medication, they added a new drug that caused him to be confused and anxious, but did nothing for the pain. By the end of the day, we got that out of his system and a newer pain and nausea medication in him. "Zofran" is the drug that he took when he started this round of chemotherapy. It is hard to believe, but it costs about $100 a pill (or in this case a shot). He hasn't eaten anything in about a week now, but still throws up when his medication levels drop, which happened during the evening. Despite all that and other ickier things, the fact that all this is a part of a transplant makes it easier to handle. This is, after all, treatment to make him better. Also, the confidence and attention that comes from the staff gives John an added boost.
This morning, Saturday, John seemed better. He sat in a chair, read and talked some. When he dozed, he would see and hear things, but that is due to the drugs. Interestingly, he receives a cognitive test almost every day as a part of a study going on. The whole thing takes about 10 minutes and starts with "Do you know your name." They ask him to repeat numbers in sequence and backwards and at the end ask if he remembers the first set of numbers. (Yes, he did better than me). They also ask questions to see if he is seeing or hearing things, is in pain and if he thinks someone is trying to hurt him. (It's not paranoia if they really are out to get you.) A study was published yesterday that followed 400 sets of twins in Sweden in which one sibling had come down with cancer. The results showed that, either due to treatments or cancer, the twin with cancer tended to develop more and earlier mental impairment. That would be a small tradeoff if it is true in John's case.
Tomorrow will be John's last shot to slow the engraftment process. After that, he should start to improve and feel better, unless acute "graft vs. host disease" sets in. He shows no signs of that at this point, but for those in whom it does occur, the new immune system attacks its new host organ by organ. That would be a valid reason to be paranoid. His various blood counts have remained supressed and low now for a week, but all the doctors are worried about is treating his various side effects.
Laura (my sister) and Mike (her husband) came to town yesterday to visit us, some friends and to ride bicycles around town. We had lunch with them today and the visited with John in the hospital. They apparently have donated to John's "Vespa fund" (please don't), because he awarded them a copy of his comic book.
We sat and talked about how John will be living with someone elses blood and immune system and whether that constituted justifiable schizophrenia. He seemed to really enjoy their visit and perked up for quite a while.
This hospital and staff is great, but the one thing they couldn't seem to find or provide has been a razor to cut a patient's hair when it begins to fall out. After asking every day, I bought one at the drug store, cleaned it with alcohol and shaved John's head. Afterwards, I donated it to the University of Washington Medical Center in John's name. Now he looks more like my son.
