Day 173
This afternoon we had "Chemo Teaching" class where John and I were instructed on the series of medications he will be taking this week, the precautions to take and what should transpire between now and Saturday when he enters the hospital.
The short version starts with him "loading" up on an anti epilepsy drug to stave off one effect of the drug that starts tomorrow - Busulfin, referred to as "radiation in a pill." In the morning at 7:00 he takes an anti-nausea drug and at 8:00 he takes (I'm not kidding) 40 Busulfin pills. the drug is meant to prevent stem cells from forming into mature cells . The drug is so strong that the pill are coated in capsule form and I'm still not allowed to touch them without gloves. Even the containers they come in have to be burned in special furnaces. He has blood drawn every half hour and run through a centrifuge and mass spectrometer to see how much he is processing over time.
This goes on for four days, although the testing fades over time. He can only eat at certain times, if he can eat. I won't mention what you have to do if he gets sick to his stomach. By Saturday, he is expected to be glad to be going to the hospital.
John has so many medications right now that we have a different daily spreadsheet of them and when they are taken. I took digital pictures of each type of pill next to its bottle, so I could identify them by name if I saw one out of context.
John coped, somewhat, with all of this information by turning to me and saying, "You got all that right? So, you will tell me what to do when the time comes?" He knew what was said, but I know it must help to be able to think only about the next step and not those that will follow.
At 7:00 in the morning, I give him an anti-nausea drug to take effect before he takes his first 40 Busulfin pills. He mentioned a couple of things this afternoon about the hospital that annoyed him, but never ventured beyond. I suppose the "big" things don't hurt in the way the smaller things do that you have the perspective to recognize as pain. Anyway, we are ready and everything else seems set as well.
One of Courtney's close High School friends was in town today and they got together for the afternoon and evening. Both seemed grown since I saw them last together.
Another of the many ironies that mark the days was the news report today of a study of Revlimid, a drug related to Thalidomide, that has been found to have a remarkable impact on MDS, the underlying disease behind John's leukemia. It would seem to be a false hope for John, because they haven't found the genetic cause of his form of AML to know if the drug might help. Also, it is only in early clinical studies at this point (sponsored by the manufacturer). I didn't find the time or purpose to mention the news to John. He has mentioned several times that the trials he is involved in will at least be of help to others in the future. Some hope, I suppose, is for others in another day and time.
It is late and tomorrow will begin early and be long.
The short version starts with him "loading" up on an anti epilepsy drug to stave off one effect of the drug that starts tomorrow - Busulfin, referred to as "radiation in a pill." In the morning at 7:00 he takes an anti-nausea drug and at 8:00 he takes (I'm not kidding) 40 Busulfin pills. the drug is meant to prevent stem cells from forming into mature cells . The drug is so strong that the pill are coated in capsule form and I'm still not allowed to touch them without gloves. Even the containers they come in have to be burned in special furnaces. He has blood drawn every half hour and run through a centrifuge and mass spectrometer to see how much he is processing over time.
This goes on for four days, although the testing fades over time. He can only eat at certain times, if he can eat. I won't mention what you have to do if he gets sick to his stomach. By Saturday, he is expected to be glad to be going to the hospital.
John has so many medications right now that we have a different daily spreadsheet of them and when they are taken. I took digital pictures of each type of pill next to its bottle, so I could identify them by name if I saw one out of context.
John coped, somewhat, with all of this information by turning to me and saying, "You got all that right? So, you will tell me what to do when the time comes?" He knew what was said, but I know it must help to be able to think only about the next step and not those that will follow.
At 7:00 in the morning, I give him an anti-nausea drug to take effect before he takes his first 40 Busulfin pills. He mentioned a couple of things this afternoon about the hospital that annoyed him, but never ventured beyond. I suppose the "big" things don't hurt in the way the smaller things do that you have the perspective to recognize as pain. Anyway, we are ready and everything else seems set as well.
One of Courtney's close High School friends was in town today and they got together for the afternoon and evening. Both seemed grown since I saw them last together.
Another of the many ironies that mark the days was the news report today of a study of Revlimid, a drug related to Thalidomide, that has been found to have a remarkable impact on MDS, the underlying disease behind John's leukemia. It would seem to be a false hope for John, because they haven't found the genetic cause of his form of AML to know if the drug might help. Also, it is only in early clinical studies at this point (sponsored by the manufacturer). I didn't find the time or purpose to mention the news to John. He has mentioned several times that the trials he is involved in will at least be of help to others in the future. Some hope, I suppose, is for others in another day and time.
It is late and tomorrow will begin early and be long.
John is much in my prayers for strength and for complete healing. I'm praying for you his father and caregiver and Debbie and Courtney and probably may others, as your support system.
God is there with you, as with all who are suffering and will give you what you need to carry on. Look and listen and you will see and hear.
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