Journal entry by Charolotte Raymond —
Hello friends,
Well, here I am in the Neely House, which was established by Cam Neely to help those of us fighting cancer, amyloidosis and a childhood lymphoma. It is a great place which supports patients beautifully. We have been here for about one and a half weeks and will be back and forth throughout the process of getting this transplant behind us.
On Saturday, I started with shots aimed at pulling the stem cells out of the bones. It is of interest to me that no one mentioned the bone pain that goes way beyond uncomfortable. I had to use opioids to combat it, but, fortunately, got past it quickly. Sunday and Monday were the same.
On Tuesday, we took stem cells for 4 hours. We only recovered 1.3 million, a long way from the amount needed for a stem cell transplant. The process was not hard at all. That afternoon, I got a shot which mobilized even more stem cells but caused no discomfort. Wednesday was very hard. They had to stop the collection 5 times because my blood pressure kept bottoming out. I am retaining 12 pounds of excess fluid. It was so rough I could not ambulate and needed a wheelchair both during the bone pain and during the aftermath of the collection.
Good news: They got enough stem cells fo do the transplant!! YAY!!!
However, today I am much better. No bone pain at all. Still moving a bit slower because of fluid retention but that is not unusual. We will be delaying the transplant until my numbers, which jumped way up 2 months ago, come back into line. Transplants work better when the light chain numbers are 50 or less. Mine are at 77, had jumped up to over 90. Another month or two of chemotherapy should pull those numbers into line.
I was quite upset when I learned that I couldn't get the transplant immediately after stem cell collection. So disappointed!! However, since my experiences of the last few days, I realize that the Creator has rescued me once again. I really need the time for my body to recover from the collection so that I can go into this challenge with as much strength as possible.
Thank you for so many good wishes and for reaching out to me throughout this process. It means a lot when I get your messages of caring and support. You are truly the best people in the world! : )
Well, here I am in the Neely House, which was established by Cam Neely to help those of us fighting cancer, amyloidosis and a childhood lymphoma. It is a great place which supports patients beautifully. We have been here for about one and a half weeks and will be back and forth throughout the process of getting this transplant behind us.
On Saturday, I started with shots aimed at pulling the stem cells out of the bones. It is of interest to me that no one mentioned the bone pain that goes way beyond uncomfortable. I had to use opioids to combat it, but, fortunately, got past it quickly. Sunday and Monday were the same.
On Tuesday, we took stem cells for 4 hours. We only recovered 1.3 million, a long way from the amount needed for a stem cell transplant. The process was not hard at all. That afternoon, I got a shot which mobilized even more stem cells but caused no discomfort. Wednesday was very hard. They had to stop the collection 5 times because my blood pressure kept bottoming out. I am retaining 12 pounds of excess fluid. It was so rough I could not ambulate and needed a wheelchair both during the bone pain and during the aftermath of the collection.
Good news: They got enough stem cells fo do the transplant!! YAY!!!
However, today I am much better. No bone pain at all. Still moving a bit slower because of fluid retention but that is not unusual. We will be delaying the transplant until my numbers, which jumped way up 2 months ago, come back into line. Transplants work better when the light chain numbers are 50 or less. Mine are at 77, had jumped up to over 90. Another month or two of chemotherapy should pull those numbers into line.
I was quite upset when I learned that I couldn't get the transplant immediately after stem cell collection. So disappointed!! However, since my experiences of the last few days, I realize that the Creator has rescued me once again. I really need the time for my body to recover from the collection so that I can go into this challenge with as much strength as possible.
Thank you for so many good wishes and for reaching out to me throughout this process. It means a lot when I get your messages of caring and support. You are truly the best people in the world! : )
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