time to recheck, rethink and redo.
so this week for me has been about a lot of thought-next month is always the dooms day of december 3rd when i was first diagnosed and of course my nurse practitioner's triplets were born on that day. But this week, I have felt different. Maybe it is the holiday season and my passion for wanting to do new things-but i think it also has to do with this feeling of wanting to be a part of something bigger.
Last week, Ed bradley passed away of leukemia. He had a different Leukemia than I have. He had Chronic Leukemia, where I have Acute Leukemia. But regardless of Leukemia, the fear of death, the looming the fight is still the same for many I believe.
I watched 60 minutes and I cried towards the end, when Jimmy Buffett was told by his wife that he better go see his best friend. Just years before, I was taking care of an autistic child, Christopher, and his father, Timothy White had passed away of a sudden heart attack in the Billboard elevators in 2002-and Jimmy Buffett was one of the people that played at his benefit show. But what got me really angry was the lack of education of leukemia. There could have been a segment, at least 5-10 minutes discussing this disease that he died from. But NO. and wouldn't a reporter want that.
PEOPLE DO NOT KNOW much about LEUKEMIA. they hear it, briefly here and there, but it is more than that. Sure the leukemia/lymphoma society has done a lot to raise awareness to the name, but more than that-what is there? Leukemia/lymphoma society, one of the biggest organizations for leukemia patients, only gives a yearly aid to patients of $500.00. That might cover half a bottle of prograf pills if you are in need of a bone marrow/stem cell transplant. Yes, it is important to do research, but it is also important to get funds for things.
So this week started with a call I made to the National Marrod Donor Program. I am so frustrated by people having to PAY to get tested to BECOME A DONOR. Unless of course you go to a PRivately Funded Drive. People do not even know what bone marrow is and if I didn't get this disease most of my friends wouldn't be in the registry that they are in now or family members. BUT still, to get a private test, done very quickly costs $400 out of pocket. The donor program assures you that if you are a match, you don't pay for anything else, because the patient does. Yes, the patient's insurance, hopefully if they have it will pay the tens of thousands of dollars to continue with the testing they need.
Last September, my doctor who I adored sat me down in a room, the day he told me I needed this and told me I need to have insurance or have half a million dollars and have up to $20,000 for at least three months of drugs I would need or he would not be able to do the transplant. I watched my father's eyes tear up. My parents have NO money, how the fuck were we going to do this?
Well my insurance came through-i was poor enough to get other things and I had some amazing people to help me out. i'm still scared by my finances and am trying. But getting people out there to donate is so hard because it is not known. Stem cells and bone marrow transplants are going to continue to save lives and after getting that donor-it is not a walk in the park. It is hard. It still it. IT is scary.
I want more done. I want it known. Yes, it is amazing all that the breast cancer foundation have done. I can't walk into a store without seeing pink products all over, but we need more orange products for leukemia. This disease needs to be known about more and people need to be more educated and there has to be a way to make the funding for getting the preliminary tests done free.
I started to read a book by Erin Zammett and I then started to do more research on her and found out she was the editor of Glamour magazine. And she has a cancer blog. That is amazing. I need a cancer blog somewhere. I was so happy about that. and she also had a website to this amazing website that is like a registry for cancer patients. i wish i knew about it months ago, but i think i will still put it up. Since I am only 6 months out of transplant and the expenses for my life are definitely beyond that money I receive per month.
I want to give some children presents this year that have parents that are going through this. Bone marrow transplants-and any cancer is scary. but i am so sick of hearing people dying of leukemia and NO newscenter going into it more in depth. I think it is appalling.
The costs for this are crazy.
So as for me, I am doing okay. I do not go back to see my doctor until December 5th. I have mad a call into the social worker at Hackensack because I wwanted to know if they had a Cancer paper that i wanted to write in, if I could send something in and then also about giving some things for the holidays.
My counts are doing okay. I have to clean up my living room right now because i have gotten some photos developed and i have them scattered all over the table. I am trying to put together a book to write but it is more of an abstract with my art.
I have one more class to complete for graduation in December.
I am doing something on cancer and leukemia and survivorship-and questioning what was one of the hardest things to deal with and how to get over it.
I am excited to be going to North carolina for xmas. I have to update some of my website soon. and I need to figure out a way to get people to understand leukemia and bone marrow transplants more.
It is so important.
I must go clean. Have a good day.
I saw my aunt's new puppy yesterday. here is a picture. oh and here is a picture of me at the beach a few months ago. and a picture of me and my niece.
Last week, Ed bradley passed away of leukemia. He had a different Leukemia than I have. He had Chronic Leukemia, where I have Acute Leukemia. But regardless of Leukemia, the fear of death, the looming the fight is still the same for many I believe.
I watched 60 minutes and I cried towards the end, when Jimmy Buffett was told by his wife that he better go see his best friend. Just years before, I was taking care of an autistic child, Christopher, and his father, Timothy White had passed away of a sudden heart attack in the Billboard elevators in 2002-and Jimmy Buffett was one of the people that played at his benefit show. But what got me really angry was the lack of education of leukemia. There could have been a segment, at least 5-10 minutes discussing this disease that he died from. But NO. and wouldn't a reporter want that.
PEOPLE DO NOT KNOW much about LEUKEMIA. they hear it, briefly here and there, but it is more than that. Sure the leukemia/lymphoma society has done a lot to raise awareness to the name, but more than that-what is there? Leukemia/lymphoma society, one of the biggest organizations for leukemia patients, only gives a yearly aid to patients of $500.00. That might cover half a bottle of prograf pills if you are in need of a bone marrow/stem cell transplant. Yes, it is important to do research, but it is also important to get funds for things.
So this week started with a call I made to the National Marrod Donor Program. I am so frustrated by people having to PAY to get tested to BECOME A DONOR. Unless of course you go to a PRivately Funded Drive. People do not even know what bone marrow is and if I didn't get this disease most of my friends wouldn't be in the registry that they are in now or family members. BUT still, to get a private test, done very quickly costs $400 out of pocket. The donor program assures you that if you are a match, you don't pay for anything else, because the patient does. Yes, the patient's insurance, hopefully if they have it will pay the tens of thousands of dollars to continue with the testing they need.
Last September, my doctor who I adored sat me down in a room, the day he told me I needed this and told me I need to have insurance or have half a million dollars and have up to $20,000 for at least three months of drugs I would need or he would not be able to do the transplant. I watched my father's eyes tear up. My parents have NO money, how the fuck were we going to do this?
Well my insurance came through-i was poor enough to get other things and I had some amazing people to help me out. i'm still scared by my finances and am trying. But getting people out there to donate is so hard because it is not known. Stem cells and bone marrow transplants are going to continue to save lives and after getting that donor-it is not a walk in the park. It is hard. It still it. IT is scary.
I want more done. I want it known. Yes, it is amazing all that the breast cancer foundation have done. I can't walk into a store without seeing pink products all over, but we need more orange products for leukemia. This disease needs to be known about more and people need to be more educated and there has to be a way to make the funding for getting the preliminary tests done free.
I started to read a book by Erin Zammett and I then started to do more research on her and found out she was the editor of Glamour magazine. And she has a cancer blog. That is amazing. I need a cancer blog somewhere. I was so happy about that. and she also had a website to this amazing website that is like a registry for cancer patients. i wish i knew about it months ago, but i think i will still put it up. Since I am only 6 months out of transplant and the expenses for my life are definitely beyond that money I receive per month.
I want to give some children presents this year that have parents that are going through this. Bone marrow transplants-and any cancer is scary. but i am so sick of hearing people dying of leukemia and NO newscenter going into it more in depth. I think it is appalling.
The costs for this are crazy.
So as for me, I am doing okay. I do not go back to see my doctor until December 5th. I have mad a call into the social worker at Hackensack because I wwanted to know if they had a Cancer paper that i wanted to write in, if I could send something in and then also about giving some things for the holidays.
My counts are doing okay. I have to clean up my living room right now because i have gotten some photos developed and i have them scattered all over the table. I am trying to put together a book to write but it is more of an abstract with my art.
I have one more class to complete for graduation in December.
I am doing something on cancer and leukemia and survivorship-and questioning what was one of the hardest things to deal with and how to get over it.
I am excited to be going to North carolina for xmas. I have to update some of my website soon. and I need to figure out a way to get people to understand leukemia and bone marrow transplants more.
It is so important.
I must go clean. Have a good day.
I saw my aunt's new puppy yesterday. here is a picture. oh and here is a picture of me at the beach a few months ago. and a picture of me and my niece.
posted by Jenn at 4:51 PM
1 Comments:
great update
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