For the last several days Gennie and I have been doing lots of reading. She, a book given to her by MCV about BMT, me, blogs I find online from people who have had BMT. The most difficult thing right now is lack of knowledge and anxiety. I believe one causes the other. The one thing we are learning is that it is almost certainly going to be a long, slow and life changing journey.
As the news gets out about this decision to consider a BMT for Gennie many friends are asking me what they can do to help. We are just at the beginning of this and right now I don't know what to ask for. I promise as we get into this I will certainly take any and all of you up on your offers to assist. It is comforting to know all of you are on our side.
There is still much to be determined over the next several months. First is whether this is the right direction for Gennie. The doctors seem to believe it is but there is much testing to do to make sure. Also Gennie has to make the final decision. Then it is on to treatments to get her blood levels where the doctors want them to start. During all of this they will be looking for a donor match for her. This search will start with her brother Spud. There is a 25% chance he will be a match. Gennie has talked with Spud and to no surprise to me he is all in. It sure would make me feel better if he is a match but if not there are many options. If any of you wish to read any of this let me know and I can post some links to the blogs I have been reading.
That's it for now. We are on our way in the morning to see our new grandson Ryker in Atlanta.
This is the story of my involvement as caregiver to my wife during her ordeal with MDS and bone marrow transplant.
Monday, July 25, 2011
Thursday, July 21, 2011
First visit to MCV
Today Gennie and I spent three hours at MCV meeting to discuss if she was a candidate for a bone marrow transplant (BMT). The doctor not only thinks she is qualified but believes she is a great candidate. For those of you who know her this will not shock you at all. If you didn't know there was anything wrong with her you would never guess it. She is the picture of fitness. She is active and full of energy. It is and always has been difficult to keep up with her. The only thing wrong is her bone marrow does not produce healthy blood cells. Both white and red. Hopefully over the next year and a half we are going to correct that.
The next step is an appointment on Aug. 4th to do another marrow biopsy. This will give her doctors a starting point, baseline if you will. Then it is on to treatment with drugs to get her counts where they need to be to help insure a successful transplant. This stage could take two months or twelve. They really can not tell. Once they determine she is ready the fun begins. Probably a month in the hospital in Richmond then three to four months outpatient care. This is going to mean I will be moving to Richmond for at least six months sometime during the next year. You can not be more than thirty miles away from the hospital during this time. They will not consider anyone for this treatment without a caregiver. Once we are cleared to move home it is many more months of being very careful. She will not be able to do many things for herself ie.. clean house, cook with raw meats or fresh fruit. Lots of stuff that i am just going to have to do. Believe it or not I am looking forward to that date. It will mean that we have made it and hopefully Gennie is not far from being cured.
I will let everyone know more after our Aug. 4th visit.
The next step is an appointment on Aug. 4th to do another marrow biopsy. This will give her doctors a starting point, baseline if you will. Then it is on to treatment with drugs to get her counts where they need to be to help insure a successful transplant. This stage could take two months or twelve. They really can not tell. Once they determine she is ready the fun begins. Probably a month in the hospital in Richmond then three to four months outpatient care. This is going to mean I will be moving to Richmond for at least six months sometime during the next year. You can not be more than thirty miles away from the hospital during this time. They will not consider anyone for this treatment without a caregiver. Once we are cleared to move home it is many more months of being very careful. She will not be able to do many things for herself ie.. clean house, cook with raw meats or fresh fruit. Lots of stuff that i am just going to have to do. Believe it or not I am looking forward to that date. It will mean that we have made it and hopefully Gennie is not far from being cured.
I will let everyone know more after our Aug. 4th visit.
Some background
I am a 59 year old guy who has been happily married to the same woman for almost 38 years. I have two great children who have married two great people who have given me two wonderful grand children.
Fourteen years ago my wife, Gennie, was treated for breast cancer. She had a lumpectomy followed up by chemo and radiation. It appeared she had made a complete recovery. Some years ago her oncologist started keeping a close eye on her blood counts. Three years ago Gennie came down with a very serious case of pneumonia while we were away on a boat trip to Crisfield, MD. She ended up spending the next two weeks in a hospital in Salisbury, MD. During her treatment for the pneumonia the doctors noticed her blood counts were very strange. She was instructed to follow up with her oncologist when she returned home. This was the beginning of her being diagnosed with MDS (myelodysplastic syndrome). It is believed that her bone marrow was damaged in her treatment for the cancer. This is not common but does happen. Since that time she has been treated by her local oncologist. This is a blood cancer but rather than try and explain it on here if you are interested in learning more about it just google MDS. It was just in the last two weeks that we were told she might be a good candidate for a bone marrow transplant. The only known cure for this condition. Today we met with Dr. Chung at MCV in Richmond to discuss the possibility of this course of treatment for Gennie. This is where I am going to start to blog about my involvement and in doing so also keep anyone interested up to date with her progress.
Fourteen years ago my wife, Gennie, was treated for breast cancer. She had a lumpectomy followed up by chemo and radiation. It appeared she had made a complete recovery. Some years ago her oncologist started keeping a close eye on her blood counts. Three years ago Gennie came down with a very serious case of pneumonia while we were away on a boat trip to Crisfield, MD. She ended up spending the next two weeks in a hospital in Salisbury, MD. During her treatment for the pneumonia the doctors noticed her blood counts were very strange. She was instructed to follow up with her oncologist when she returned home. This was the beginning of her being diagnosed with MDS (myelodysplastic syndrome). It is believed that her bone marrow was damaged in her treatment for the cancer. This is not common but does happen. Since that time she has been treated by her local oncologist. This is a blood cancer but rather than try and explain it on here if you are interested in learning more about it just google MDS. It was just in the last two weeks that we were told she might be a good candidate for a bone marrow transplant. The only known cure for this condition. Today we met with Dr. Chung at MCV in Richmond to discuss the possibility of this course of treatment for Gennie. This is where I am going to start to blog about my involvement and in doing so also keep anyone interested up to date with her progress.
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