It has been a whole lot of awful lately. The good is seeing our families come together to support us. I just don't have a clue what we would be doing without them.
We finally got some answers today. The PET scan showed tumors just about everywhere. The doctors have ordered more testing on the biopsy tissue and an MRI of his brain. I can't even process this yet. The pain in his hips and going down his leg are not just from the tumor in his back. He has the socket of one hip eaten up with tumor and the part of the bone that you sit on is eaten up with tumor on the other side. No wonder it has been so hard for him to sit.
We are really pushing food on him but he isn't ever hungry. In under a week, he lost 12 pounds. He has to have food in the morning to take his medications. Even if it is a protein shake, he MUST eat something. It is pretty easy to tell that he doesn't want to eat, but is doing it anyway. We have been trying to get him to eat about every 2 hours. We are using an extra scoop of protein when he wants a protein shake because he doesn't want to eat anything. Apparently there are tumors on both sides of his neck.
Plus the pharmacy messed up his medications. They were low on BOTH medications, but got the documentation messed up. The new processing procedure for pain medications is a mess, and it is people like my husband who suffer. It will probably mean a trip to the ER or a really bad day seen by the doctor so that the medications are increased. A new prescription for a different strength can be filled any time. As the medications are not controlling the pain terribly well, that may be in order. The doctor just didn't want to do that with other things going on.
We will get chemo started after radiation. I have to schedule inserting a port before it starts. They don't start chemo while you are having radiation. It is going to be a LONG process.
Thankfully the images to set up radiation went far enough down his legs to cover his hips. They can set up his current regimen to add "beams" to try to shrink the tumors in each hip. That will start Mon. It should give relief and having the radiologist do this now is a great relief.
Years ago, my husband worked at a Superfund site. We wonder if that is a contributing factor. I have to do some research.
Thanks you for letting me get this all out. I really just don't know how to cope or how to help my husband and the kids cope.
We finally got some answers today. The PET scan showed tumors just about everywhere. The doctors have ordered more testing on the biopsy tissue and an MRI of his brain. I can't even process this yet. The pain in his hips and going down his leg are not just from the tumor in his back. He has the socket of one hip eaten up with tumor and the part of the bone that you sit on is eaten up with tumor on the other side. No wonder it has been so hard for him to sit.
We are really pushing food on him but he isn't ever hungry. In under a week, he lost 12 pounds. He has to have food in the morning to take his medications. Even if it is a protein shake, he MUST eat something. It is pretty easy to tell that he doesn't want to eat, but is doing it anyway. We have been trying to get him to eat about every 2 hours. We are using an extra scoop of protein when he wants a protein shake because he doesn't want to eat anything. Apparently there are tumors on both sides of his neck.
Plus the pharmacy messed up his medications. They were low on BOTH medications, but got the documentation messed up. The new processing procedure for pain medications is a mess, and it is people like my husband who suffer. It will probably mean a trip to the ER or a really bad day seen by the doctor so that the medications are increased. A new prescription for a different strength can be filled any time. As the medications are not controlling the pain terribly well, that may be in order. The doctor just didn't want to do that with other things going on.
We will get chemo started after radiation. I have to schedule inserting a port before it starts. They don't start chemo while you are having radiation. It is going to be a LONG process.
Thankfully the images to set up radiation went far enough down his legs to cover his hips. They can set up his current regimen to add "beams" to try to shrink the tumors in each hip. That will start Mon. It should give relief and having the radiologist do this now is a great relief.
Years ago, my husband worked at a Superfund site. We wonder if that is a contributing factor. I have to do some research.
Thanks you for letting me get this all out. I really just don't know how to cope or how to help my husband and the kids cope.
