the email i sent out tonight.
hello,
i hope everyone had a great holiday season and a happy new year. i feel that something was allowing me to get through 2005 and january 1st, my body felt so tired-of course i was up until 430 in the morning but it was this "sick" tired. i went to the doctor the following day-and sure enough my counts have dropped down a lot and after looking through a microscope at my blood, there were some cells that were looking leukemic-about 5%. This was enough for my doctor to call me today and after a conversation with my transplant doctor in hackensack and a transplant meeting with all the doctors at the Cancer Institute of New Jersey, they all agreed I should begin treatment. This treatment is a round of chemotherapy. On Monday or Tuesday, depending on when a bed is available, I will be admitted to Robert Wood Johnson in New Brunswick where I will get a 5-7 day treatment of chemotherapy. I will then be in the hospital and I could be in there anywhere from about a week and half to four weeks.
my doctor thinks that it is better to go into a transplant in remission and that is what we hoep to achieve with this. of course this will be very intensive chemotherapy. It is called reinduction.
Then after recovery from this, I will hopefully be ready to get the bone marrow transplant.
This will again require another round of chemo-intensive-as I have discussed before or if up on my blog and then the transplant.
So this news is not shocking but it kinda sucks.
However, i did receive some good news that they have found some donors that are matches. They are not perfect 10 out of 10 HLA typed matches, but 9 out of 10 and they say that is okay. THey have not identified one specific donor yet and said it would take at least four weeks. With the rapidness of leukemia, there is no way I would be able to just go into the chemo and then the transplant. My doctor said that people who are in remission do better with transplant and as much as I hate to agree because it requires me to feel like shit, I have thought this from the beginning. But if what I am looking for is a cure, I just have to fight it and deal.
Many things have been prepared for and I have been able to finish school for the semester. I chose to take a medical leave of absence so I have had about a week and a half off but I have also been waiting to start fighting this. My hemoglobin has dropped and that has been making me feel tired. I feel okay and it will hopefully make it easier to fight this and not the opposite where I feel more awful. But whatever it does, I will knife it.
So in an optimistic view, at least I am going into this chemo round knowing there is a donor for me. So after the recovery, I will be able to do the transplant.
------------------------------------------------------------
FAQS:
Q: I do not understand when you say there is now leukemia in your blood, where was it before?
A; In September, there was no evidence of "blasts" in my blood, there was only evidence, approx. 5% in my molecular structure. It was only during this certain test called FISH (don't ask me what that stands for-ask my doctor) that they were able to detect this. There has only been evidence of actual leukemia looking through a microscope with my blood in the past two weeks.
Q: Why do you feel so tireD? Does leukemia only affect your white blood cells?
A; Leukemia affects the whole bone marrow. Although the leukemia is created through the white cells and affects primarily the white cells, it starts in the bone marrow. Because it starts there, it starts to deter, not only white blood cells to be made to destroy infections, it also decreases my hemoglobin ( red blood cells-Hemoglobin transports oxygen from the lungs to the rest of the body, such as to the muscles, where it releases the oxygen load.) This leads to feeling tired, suppression of appetite, an increased heart rate, etc. A normal hemoglobin is between 12-15. Mine right now is at about a 10. That is okay but it can get a little below 7. And it is extremely tiring-and weak. Another type of cell that is made in the bone marrow are called platelets. Plateletes are minute, nonnucleated, disklike cytoplasmic body found in the blood plasma of mammals that is derived from a megakaryocyte and functions to promote blood clotting. The decrease in platelets lead to taking longer to heal. A normal range is from about 140,00 to 400,000. I have about 60,000-70,000. That is actually okay-right now. But after chemo they can go underneath 10,000, which can be very dangerous. It is very important not to fall or get hurt or cause any bleeding in the gums because my body would not be able to stop it. So the whole bone marrow is affected with leukemia.
Q: what is the process of chemotherapy like?
A: chemotherapy is different for everyone. But in the other times I have been through it, there is the week of getting treatment-Oh this is the process for leukemia. Please know that all cancers have different treatments and what people are able to do. For the type of leukemia I have it is mandatory to stay in the hospital during chemotherapy. After the chemo-it take a few days for my counts to go down. My WBC will usually go to a .2 or .1 which is very low so it is important to stay away from infection. Hemoglobin and platelets will also go down. Even though chemo is trying to kill the bad cells, since it is basically rat poision and doesn't know what it is killing, it also goes after good cells, so those are the cells that will hopefully come back. IN the past after the chemo it has taken about 2-3, even four weeks for the counts to come back to a "normal" place where I do not need blood or platelet transfusions. not needing transfusions at robert wood is when hemoglobin is above a 10 and platelets are above 10,000 or 20,000. I usually make them give me a transfusion unless they are over 20,000.
I want this to be informative for people and to understand what is going on with me, and what I am going through.
I want people to keep doing bone marrow drives-to setting them up.
I am switching over soon to a different type of fund that will actually be tax-deductible and is run through a transplant fund-
if people to send donations to me, they still can but will not be tax-deductible. I am mainly also setting this up to do some fundraising. I have Old Tappan high school who is interested in doing something. I need people to keep being active for me now if you can.
I have faith in the hands that I am in and my doctor -Dr. Schaar is a really amazing doctor. And my nurse practitioner, Laura, the person that I really relied on the first time, came back the time this happened to me and instead of seeing that as bad luck, I see myself as lucky to have her by my side again-I can't say that the administration is great-it needs a lot of work but these people really know what they are doing-and I have faith that they are doing what is right. And I think it's the right move because if I didn't, I would be fighting. It is time.
I love you all.
~jenn
http://www.jfmedicalfund.org
i hope everyone had a great holiday season and a happy new year. i feel that something was allowing me to get through 2005 and january 1st, my body felt so tired-of course i was up until 430 in the morning but it was this "sick" tired. i went to the doctor the following day-and sure enough my counts have dropped down a lot and after looking through a microscope at my blood, there were some cells that were looking leukemic-about 5%. This was enough for my doctor to call me today and after a conversation with my transplant doctor in hackensack and a transplant meeting with all the doctors at the Cancer Institute of New Jersey, they all agreed I should begin treatment. This treatment is a round of chemotherapy. On Monday or Tuesday, depending on when a bed is available, I will be admitted to Robert Wood Johnson in New Brunswick where I will get a 5-7 day treatment of chemotherapy. I will then be in the hospital and I could be in there anywhere from about a week and half to four weeks.
my doctor thinks that it is better to go into a transplant in remission and that is what we hoep to achieve with this. of course this will be very intensive chemotherapy. It is called reinduction.
Then after recovery from this, I will hopefully be ready to get the bone marrow transplant.
This will again require another round of chemo-intensive-as I have discussed before or if up on my blog and then the transplant.
So this news is not shocking but it kinda sucks.
However, i did receive some good news that they have found some donors that are matches. They are not perfect 10 out of 10 HLA typed matches, but 9 out of 10 and they say that is okay. THey have not identified one specific donor yet and said it would take at least four weeks. With the rapidness of leukemia, there is no way I would be able to just go into the chemo and then the transplant. My doctor said that people who are in remission do better with transplant and as much as I hate to agree because it requires me to feel like shit, I have thought this from the beginning. But if what I am looking for is a cure, I just have to fight it and deal.
Many things have been prepared for and I have been able to finish school for the semester. I chose to take a medical leave of absence so I have had about a week and a half off but I have also been waiting to start fighting this. My hemoglobin has dropped and that has been making me feel tired. I feel okay and it will hopefully make it easier to fight this and not the opposite where I feel more awful. But whatever it does, I will knife it.
So in an optimistic view, at least I am going into this chemo round knowing there is a donor for me. So after the recovery, I will be able to do the transplant.
------------------------------------------------------------
FAQS:
Q: I do not understand when you say there is now leukemia in your blood, where was it before?
A; In September, there was no evidence of "blasts" in my blood, there was only evidence, approx. 5% in my molecular structure. It was only during this certain test called FISH (don't ask me what that stands for-ask my doctor) that they were able to detect this. There has only been evidence of actual leukemia looking through a microscope with my blood in the past two weeks.
Q: Why do you feel so tireD? Does leukemia only affect your white blood cells?
A; Leukemia affects the whole bone marrow. Although the leukemia is created through the white cells and affects primarily the white cells, it starts in the bone marrow. Because it starts there, it starts to deter, not only white blood cells to be made to destroy infections, it also decreases my hemoglobin ( red blood cells-Hemoglobin transports oxygen from the lungs to the rest of the body, such as to the muscles, where it releases the oxygen load.) This leads to feeling tired, suppression of appetite, an increased heart rate, etc. A normal hemoglobin is between 12-15. Mine right now is at about a 10. That is okay but it can get a little below 7. And it is extremely tiring-and weak. Another type of cell that is made in the bone marrow are called platelets. Plateletes are minute, nonnucleated, disklike cytoplasmic body found in the blood plasma of mammals that is derived from a megakaryocyte and functions to promote blood clotting. The decrease in platelets lead to taking longer to heal. A normal range is from about 140,00 to 400,000. I have about 60,000-70,000. That is actually okay-right now. But after chemo they can go underneath 10,000, which can be very dangerous. It is very important not to fall or get hurt or cause any bleeding in the gums because my body would not be able to stop it. So the whole bone marrow is affected with leukemia.
Q: what is the process of chemotherapy like?
A: chemotherapy is different for everyone. But in the other times I have been through it, there is the week of getting treatment-Oh this is the process for leukemia. Please know that all cancers have different treatments and what people are able to do. For the type of leukemia I have it is mandatory to stay in the hospital during chemotherapy. After the chemo-it take a few days for my counts to go down. My WBC will usually go to a .2 or .1 which is very low so it is important to stay away from infection. Hemoglobin and platelets will also go down. Even though chemo is trying to kill the bad cells, since it is basically rat poision and doesn't know what it is killing, it also goes after good cells, so those are the cells that will hopefully come back. IN the past after the chemo it has taken about 2-3, even four weeks for the counts to come back to a "normal" place where I do not need blood or platelet transfusions. not needing transfusions at robert wood is when hemoglobin is above a 10 and platelets are above 10,000 or 20,000. I usually make them give me a transfusion unless they are over 20,000.
I want this to be informative for people and to understand what is going on with me, and what I am going through.
I want people to keep doing bone marrow drives-to setting them up.
I am switching over soon to a different type of fund that will actually be tax-deductible and is run through a transplant fund-
if people to send donations to me, they still can but will not be tax-deductible. I am mainly also setting this up to do some fundraising. I have Old Tappan high school who is interested in doing something. I need people to keep being active for me now if you can.
I have faith in the hands that I am in and my doctor -Dr. Schaar is a really amazing doctor. And my nurse practitioner, Laura, the person that I really relied on the first time, came back the time this happened to me and instead of seeing that as bad luck, I see myself as lucky to have her by my side again-I can't say that the administration is great-it needs a lot of work but these people really know what they are doing-and I have faith that they are doing what is right. And I think it's the right move because if I didn't, I would be fighting. It is time.
I love you all.
~jenn
http://www.jfmedicalfund.org
posted by Jenn at 1:01 AM
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