No appointments today... Just being lazy... It is a beautiful day in Denver, cloudy and cool. I set up a tent in the back of the house for Jody to sit under. She likes to look at her garden. I am planning on tearing out some of the plants and planting some Mums for her. The Marigolds are still doing well along with the Petunias. I am afraid the Portulaca plants have about given up, still a few blooms but turning grey. I will try to get some pictures for everyone.
Jody is feeling a little sluggish today. Last week she had a reaction to her Magnesium IV and I think she is reacting again, just not as bad. In Jody's last CBC her HCT was down to 25.9. Normally they like to infuse her below 26, but they decided to hold off until they see her count on Friday. A low HCT count makes her feel tired, so that may be causing the "blahs".
More to follow...
Jody's Garden
"No Worries"................. On a Sunset Cruise off Na Pali.................. "You can click on the picture for a tour of what we saw and the fun we had..............." (If you are new to my blog, I post the most recent news or event first (or on top). If you are trying to catch up, you may want to start with my older posts first by clicking on the "Blog Archive" and choosing a title)
Wednesday, September 8, 2010
Tuesday, September 7, 2010
Day Plus Forty-One
Hello to everyone one I am back... settling in to the routine at home. If anyone doubted it Jody is a problem child to care for, you would be wrong! Through out Jody's life she has taken care of everyone else and now she has to sit back and let me care for her. Well, that is a problem... but we are getting it down. It was almost routine until the holiday came up and the schedule of doctor visits changed.
Last week was so on and off... We had our normal Monday, Wednesday, Friday appointments and at each appointment we asked for the results of the bone marrow biopsy (see Day Plus Twenty-Eight... I also talk about it in Day Plus Thirty-One). Each day we asked and there were no results and I would put off writing the blog. Sorry! The bone marrow biopsy was done on Thursday, August 26 and we finally got all of the results. YES! Just like the earlier test had confirmed Jody has engrafed and over 95% of the stem cells found in her bone marrow are from her donor. That means less than 5% is her own stem cells. In addition, the biopsy confirmed that she had less than 4 percent blast cells. This is good. I wrote about her disease in one of my earlier posts, in case you forgot, here it is again.
Jody's disease (Myelofibrosis) is a high-risk MDS (Myelodysplastic syndromes (MDS) is a term that is used to describe a group of cancers of the blood and marrow). Jody had immature cells called "blast cells" that made up less than 10 percent of the cells in her marrow (per her February 11th bone marrow biopsy). In Jody's June biopsy (after taking 30 days of chemo) she showed no increase in blasts cells from the February biopsy. Normally, blast cells make up less than 5 percent of all the cells in the marrow and they can develop into normal blood cells. In Jody, the blast cells that were being made would not develop into normal red cells, white cells and platelets. This decrease in blood cell counts (red cells, white cells and platelets) leads to; anemia or low red cell count, neutropenia or low white blood cells, and thrombocytopenia or low platelet count. People with more than 20 percent blast cells in the marrow cells are considered to have acute myelogenous leukemia (AML). Jody was headed in that direction. MDS is sometimes called "smoldering leukemia," or "preleukemia." MDS is a diagnosis of cancer. The term "cancer" means that a change to a normal cell leads to the development of abnormal cells.
Jody has shown some GVHD (Graft vs Host Disease) on her body in the form of a rash. This is good because it further indicates her donor cells are beginning to take hold of her immune system. The doctors wanted to confirm the rash was GVHD so they wanted to do a biopsy. When Jody had her bone marrow biopsy done (under sedation) she also had a biopsy of the skin on her leg. The results came back confirming it was GVHD, so the doctors put her on Prednizone, which is a steroid. The Prednizone drug sedates her immune system's attack and eventually the attack will subside.
I hope everyone is as excited as we are with the news...
We have received some calls and emails asking how things were going. At first I was excited because you were calling, then I started to feel I was letting everyone down by not keeping up with the daily posts on the blog. So I went to the garage and found a 100 feet of 1/2" nylon rope and tied Jody to a chair... JUST KIDDING!
Last week was so on and off... We had our normal Monday, Wednesday, Friday appointments and at each appointment we asked for the results of the bone marrow biopsy (see Day Plus Twenty-Eight... I also talk about it in Day Plus Thirty-One). Each day we asked and there were no results and I would put off writing the blog. Sorry! The bone marrow biopsy was done on Thursday, August 26 and we finally got all of the results. YES! Just like the earlier test had confirmed Jody has engrafed and over 95% of the stem cells found in her bone marrow are from her donor. That means less than 5% is her own stem cells. In addition, the biopsy confirmed that she had less than 4 percent blast cells. This is good. I wrote about her disease in one of my earlier posts, in case you forgot, here it is again.
Jody's disease (Myelofibrosis) is a high-risk MDS (Myelodysplastic syndromes (MDS) is a term that is used to describe a group of cancers of the blood and marrow). Jody had immature cells called "blast cells" that made up less than 10 percent of the cells in her marrow (per her February 11th bone marrow biopsy). In Jody's June biopsy (after taking 30 days of chemo) she showed no increase in blasts cells from the February biopsy. Normally, blast cells make up less than 5 percent of all the cells in the marrow and they can develop into normal blood cells. In Jody, the blast cells that were being made would not develop into normal red cells, white cells and platelets. This decrease in blood cell counts (red cells, white cells and platelets) leads to; anemia or low red cell count, neutropenia or low white blood cells, and thrombocytopenia or low platelet count. People with more than 20 percent blast cells in the marrow cells are considered to have acute myelogenous leukemia (AML). Jody was headed in that direction. MDS is sometimes called "smoldering leukemia," or "preleukemia." MDS is a diagnosis of cancer. The term "cancer" means that a change to a normal cell leads to the development of abnormal cells.
Jody has shown some GVHD (Graft vs Host Disease) on her body in the form of a rash. This is good because it further indicates her donor cells are beginning to take hold of her immune system. The doctors wanted to confirm the rash was GVHD so they wanted to do a biopsy. When Jody had her bone marrow biopsy done (under sedation) she also had a biopsy of the skin on her leg. The results came back confirming it was GVHD, so the doctors put her on Prednizone, which is a steroid. The Prednizone drug sedates her immune system's attack and eventually the attack will subside.
I hope everyone is as excited as we are with the news...
Sunday, August 29, 2010
Day Plus Thirty-Two
It is Sunday morning about 6:00 am Jody is sleeping. I think this may be the best time to work on my posts. My day is full with taking care of Jody. We have medicines to take four times a day, a two hour infusion, a one hour walk, preparing and eating three meals a day, trips to the clinic three days a week (last week we had one extra with the bone marrow biopsy) normal weekly house chores and trying to keep Jody entertained. Jody is not one who sits and reads, she loves to cook, garden and clean. All of which she is not allowed to do. Yesterday I was doing the wash, I went upstairs to work on the blog and I heard her in the laundry room. We went out for our walk around the block and she tries to pickup the garbage people dropped in their yards and on the street. "What pigs they are, leaving trash in their yard." "Well OK, will you pick it up for me?" NO, I am not going around picking up other peoples garbage!
We had to go over that the doctor does not want her doing laundry because of bacteria, touching garbage and gardening because of germs. "I will wear a mask, and rubber gloves." NO, why take a chance? Let it be for awhile. "But you are not doing it right." Too bad, when you get better you can do it right... let me do it wrong for awhile. (I do not know how I was able to help raise four children, manage a business and live to be 60 all before I met Jody. I must have done it completely by accident.) This has become our biggest challenge. Chemo... no problem; a bone marrow transplant... gee that was easy; lost our hair... so what, it will grow back; let Tom take care of you... THAT IS IMPOSSIBLE, HE CAN NOT DO IT THE CORRECT WAY, LIKE I DO!
Jody and I sat down yesterday and had a discussion. We are going to try harder, both of us. I will try to do things the correct way (her way) and she will stay out of the laundry room and kitchen. (Do not know how long this will last.)
OK, let me bring everyone up to date. Jody s doing fabulous, according to her Dr. Gregory. All of her blood counts are in the normal range. Jody's ANC is now stabilized in the 3000 range (1500 to 7500 is normal) Her HCT is a little low at 32.2 (normal is 38.0 to 48.0) but Jody has never been in the normal range, this is high for her. Jody's WBC is at 4.3 (normal is 3.0 to 10.0).
Jody's big challenge is to rebuild her entire immune system that the chemo destroyed. Her diseased stem cells were not creating the cells she needed including the ones she needed to fight off the potential blood cancer known as leukemia. Jody's new donor stem cells now need to do the work. All of the cellular elements of blood, including the red blood cells that transport oxygen, the platelets that trigger blood clotting in damaged tissues, and the white blood cells of the immune system, come from the same stem cells in the bone marrow.
The cells that are a part of the immune system (white blood cells or WBC) are complex and different with specific functions. These cells come from two types of stem cells called Myeloid and Lymphoid.
Myeloid stem cells produce macrophages, which are found in the body tissues, play a critical part in immunity. Dendritic cells ingest large amounts of fluid upon encountering a pathogen and migrate to lymph nodes. Mast cells release substances that play a part in protecting mucosal surfaces like the nose, mouth and eyes against pathogens. Granulocytes are produced in increased numbers during an immune response and leave the blood to migrate to sites of infection or inflammation. Neutrophils are the most numerous and most important cellular component of the immune response and fight bacterial infection. Eosinophils are thought to be important chiefly in defense against parasitic infections. Basophils is probably similar to that of eosinophils and mast cells and work on allergic inflammation.
Lymphoid stem cells produce B cells, which secrete antibodies; and T cells, of which there are two classes; one, which kill cells infected with viruses and the second activates other cells such as B cells and macrophages. Lymphocytes are remarkable in being able to mount a specific immune response against virtually any foreign antigen. Another type of lymphoid stem cells produces natural killer cells. These cells circulate in the blood and are able to recognize and kill some abnormal cells like cancer and virus-infected cells, and are thought to be important in the immune defense against intracellular pathogens.
The complicated process of bringing all of these cells back and testing to see if they are produced when a response is needed is the big challenge ahead. They are testing her blood cells three times a week to measure what is going on. In addition, they are monitoring her electrolytes to measure her reactions to the drugs she is being given and are looking for Graft vs Host Disease (GVHD).
Last week (Thursday) we went in for a bone marrow biopsy as well as a skin biopsy. The biopsy will tell us how well the transplant is doing. If you recall, on the 16th of August they sent a sample of Jody's blood off for DNA testing. One of the tests came back that she had 85% of the donor's stem cells and the other came back at 95%. The BMT team wants to compare the results of the DNA test to the results of the biopsy. We are expecting to hear the results of this comparison on Wednesday or Friday next week. On Monday, we hope to hear the initial report, which will tell us if they found any "blast" cells. This is the cell, which caused everything. If there are no more blast cells the disease is not growing. Future biopsies will determine if she is cured.
This should bring everyone up to date. Jody is doing well and adjusting to life at home with me. I know she would love to hear from everyone so call, write, or email. She can have visitors as long as you are not sick. Jody needs to be occupied at all times, so do not feel like you are bothering her. Call before you stop by, in case we are going to the clinic.
We love you all!
I am going to post things at random now, so be sure to check in...
We had to go over that the doctor does not want her doing laundry because of bacteria, touching garbage and gardening because of germs. "I will wear a mask, and rubber gloves." NO, why take a chance? Let it be for awhile. "But you are not doing it right." Too bad, when you get better you can do it right... let me do it wrong for awhile. (I do not know how I was able to help raise four children, manage a business and live to be 60 all before I met Jody. I must have done it completely by accident.) This has become our biggest challenge. Chemo... no problem; a bone marrow transplant... gee that was easy; lost our hair... so what, it will grow back; let Tom take care of you... THAT IS IMPOSSIBLE, HE CAN NOT DO IT THE CORRECT WAY, LIKE I DO!
Jody and I sat down yesterday and had a discussion. We are going to try harder, both of us. I will try to do things the correct way (her way) and she will stay out of the laundry room and kitchen. (Do not know how long this will last.)
OK, let me bring everyone up to date. Jody s doing fabulous, according to her Dr. Gregory. All of her blood counts are in the normal range. Jody's ANC is now stabilized in the 3000 range (1500 to 7500 is normal) Her HCT is a little low at 32.2 (normal is 38.0 to 48.0) but Jody has never been in the normal range, this is high for her. Jody's WBC is at 4.3 (normal is 3.0 to 10.0).
Jody's big challenge is to rebuild her entire immune system that the chemo destroyed. Her diseased stem cells were not creating the cells she needed including the ones she needed to fight off the potential blood cancer known as leukemia. Jody's new donor stem cells now need to do the work. All of the cellular elements of blood, including the red blood cells that transport oxygen, the platelets that trigger blood clotting in damaged tissues, and the white blood cells of the immune system, come from the same stem cells in the bone marrow.
The cells that are a part of the immune system (white blood cells or WBC) are complex and different with specific functions. These cells come from two types of stem cells called Myeloid and Lymphoid.
Myeloid stem cells produce macrophages, which are found in the body tissues, play a critical part in immunity. Dendritic cells ingest large amounts of fluid upon encountering a pathogen and migrate to lymph nodes. Mast cells release substances that play a part in protecting mucosal surfaces like the nose, mouth and eyes against pathogens. Granulocytes are produced in increased numbers during an immune response and leave the blood to migrate to sites of infection or inflammation. Neutrophils are the most numerous and most important cellular component of the immune response and fight bacterial infection. Eosinophils are thought to be important chiefly in defense against parasitic infections. Basophils is probably similar to that of eosinophils and mast cells and work on allergic inflammation.
Lymphoid stem cells produce B cells, which secrete antibodies; and T cells, of which there are two classes; one, which kill cells infected with viruses and the second activates other cells such as B cells and macrophages. Lymphocytes are remarkable in being able to mount a specific immune response against virtually any foreign antigen. Another type of lymphoid stem cells produces natural killer cells. These cells circulate in the blood and are able to recognize and kill some abnormal cells like cancer and virus-infected cells, and are thought to be important in the immune defense against intracellular pathogens.
The complicated process of bringing all of these cells back and testing to see if they are produced when a response is needed is the big challenge ahead. They are testing her blood cells three times a week to measure what is going on. In addition, they are monitoring her electrolytes to measure her reactions to the drugs she is being given and are looking for Graft vs Host Disease (GVHD).
Last week (Thursday) we went in for a bone marrow biopsy as well as a skin biopsy. The biopsy will tell us how well the transplant is doing. If you recall, on the 16th of August they sent a sample of Jody's blood off for DNA testing. One of the tests came back that she had 85% of the donor's stem cells and the other came back at 95%. The BMT team wants to compare the results of the DNA test to the results of the biopsy. We are expecting to hear the results of this comparison on Wednesday or Friday next week. On Monday, we hope to hear the initial report, which will tell us if they found any "blast" cells. This is the cell, which caused everything. If there are no more blast cells the disease is not growing. Future biopsies will determine if she is cured.
This should bring everyone up to date. Jody is doing well and adjusting to life at home with me. I know she would love to hear from everyone so call, write, or email. She can have visitors as long as you are not sick. Jody needs to be occupied at all times, so do not feel like you are bothering her. Call before you stop by, in case we are going to the clinic.
We love you all!
I am going to post things at random now, so be sure to check in...
Saturday, August 28, 2010
Day Plus Thirty-One
OK... OK...
I am a little behind... Today is Saturday and I am planning to catch everyone up today. We do not have any appointments and all is well, except that I am challenged. First to get the little misuses settled in, next to get everything done that I forgot about...
Excuse me I have to go and stop her from doing the wash...
I am a little behind... Today is Saturday and I am planning to catch everyone up today. We do not have any appointments and all is well, except that I am challenged. First to get the little misuses settled in, next to get everything done that I forgot about...
Excuse me I have to go and stop her from doing the wash...
Wednesday, August 25, 2010
Day Plus Twenty-Eight
Everything still going smooth...
We just got back from our visit to the clinic. Jody checked out OK. They are very excited about her progress. The BMT team decided to adjust her magnesium infusion a little, so we will have to wait until 5:00 pm for them to courier the IV fluids to us.
Tomorrow we have a bone marrow biopsy at noon. This biopsy will tell the doctors how well the stem cells have grafted into her bone marrow. It will take a week or so to get the results. I will have them posted as soon as we hear.
More to follow....
We just got back from our visit to the clinic. Jody checked out OK. They are very excited about her progress. The BMT team decided to adjust her magnesium infusion a little, so we will have to wait until 5:00 pm for them to courier the IV fluids to us.
Tomorrow we have a bone marrow biopsy at noon. This biopsy will tell the doctors how well the stem cells have grafted into her bone marrow. It will take a week or so to get the results. I will have them posted as soon as we hear.
More to follow....
Tuesday, August 24, 2010
Day Plus Twenty-Seven
Jody is home...
Jody and I arrived at home around 2:30 pm yesterday. She has settled in and enjoying her new found freedom. We are both very happy.
I will be writing more later today.
Love to everyone!
Jody and I arrived at home around 2:30 pm yesterday. She has settled in and enjoying her new found freedom. We are both very happy.
I will be writing more later today.
Love to everyone!
"There is only one thing that makes a dream impossible to achieve: the fear of failure."
Paulo Coelho (1947 – )
Brazilian writer
Monday, August 23, 2010
Day Plus Twenty-Six
We are both excited! Jody has been in the hospital for 32 days and today we get to come home. Dr. Brunvand stopped by about 7:30 am and examined her and told us he has completed the paper work. So baring any complications, we should be home sometime this afternoon.
Jody's counts...
Yesterday, Jody's counts dropped. )-: This is our first drop since we turned up on "Day Plus Sixteen". Can you believe it, that was ten days ago! The nurses take a blood draw at midnight and send it off to the lab. The report comes back around 5:00 am so they can start her IV's. Jody's ANC dropped from 5084 to 4000, which is a drop of 21%. Her HCT dropped from 26.2 to 23.9, which is 9%. The lab has an error rate of plus or minus 5%. There are a lot of factors that effect Jody's blood counts; water intake, food, and other medicines. The BMT team fully expect the counts to go up and down, that is why they are checked daily. Because Jody's HCT is now below 24 she needed a transfusion of blood this morning. In addition, Jody's platelets and WBC counts dropped also. Regardless of what dropped Jody remains in a normal range for discharge. As excited we are about getting out of the hospital the drop in counts has brought us back to the reality that this journey is not over. Jody and I have some big challenges ahead.
We are home!
Canadian actress, Academy Award® winner
Co-founder of United Artists
Jody's counts...
Yesterday, Jody's counts dropped. )-: This is our first drop since we turned up on "Day Plus Sixteen". Can you believe it, that was ten days ago! The nurses take a blood draw at midnight and send it off to the lab. The report comes back around 5:00 am so they can start her IV's. Jody's ANC dropped from 5084 to 4000, which is a drop of 21%. Her HCT dropped from 26.2 to 23.9, which is 9%. The lab has an error rate of plus or minus 5%. There are a lot of factors that effect Jody's blood counts; water intake, food, and other medicines. The BMT team fully expect the counts to go up and down, that is why they are checked daily. Because Jody's HCT is now below 24 she needed a transfusion of blood this morning. In addition, Jody's platelets and WBC counts dropped also. Regardless of what dropped Jody remains in a normal range for discharge. As excited we are about getting out of the hospital the drop in counts has brought us back to the reality that this journey is not over. Jody and I have some big challenges ahead.
We are home!
“Today is a new day. You will get out of it just what you put into it...”Mary Pickford (1892–1979)
Canadian actress, Academy Award® winner
Co-founder of United Artists
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