Feedback Abour Yr Leukemia

Surviving and Living with Leukemia: Hello, I was diagnosed with leukemia on December 3, 2003, (AML M4eos), at the age of 24. I went into remission after my first round of chemo and had to continue with four more intensive rounds of chemotherapy until May 2004. September 2005, I was getting my monthly blood work check up and my White blood cells had dropped drastically to 1.4. I had to have an emergency bone marrow biopsy. First I was told I was clear, but then after the molecular test, FISH, came back, it showed there were 5% leukemic cells. My only option at that point was a bone marrow transplant. April 5, 2006 marked my new day 0. I now have male blood in me. The labs call to ask if I am a male. I am on month 7 post transplant. For years, I have been trying to graduate. And leukemia keeps putting it off, but I keep fighting it back. For my final project at my school, Eugene Lang College in New York city part of the New School. http://www.lang.edu, I am compiling information from people with leukemia who are surviving. You can be in the middle of treatment, post treatment or even pre-treatment. I would like to first put this on message boards and see the response I get. I have read a few books over the past few months on leukemia-patients, young patients, people who have watched their loved ones die from this disease, the 60 minutes News reporter who passed away recently, Ed Bradley. There is also Mary, from Peter, Paul and Mary who had a bone marrow transplant over a year ago. I have realized how little information is really out there for the patient and even for the world. I watched the 60 Minutes episode on Ed Bradley after he passed away and I was angry of the reporting. This is a journalistic video of someone’s life and there was not even five minutes to teach what leukemia was or how it affects someone. It usually is just said in passing, “an infection, the person could not fight.” But there is so much more than that. Some of my friends didn’t even know what a bone marrow was, didn’t even know they had this thing in their body called a bone marrow. It is important to teach and learn about leukemia but it is also really important to have more people’s voices heard who have had this disease. These personal stories are reassuring for the next person who is diagnosed in helping him or her get over their own fears or learn to control them. I see the research of finding cures for cancer important so people do not have to go through the things we’ve been through. But more than that, there are people going through this. We need to look inside ourselves to deal with the subjective feelings this disease gives and gave to us. That is exactly my focus. In ending, I want to use one of my favorite quotes from Carl Jung, “Who looks outside, dreams-Who looks inside, awakens” If you have the time, I would really appreciate these questions answered. You can answer on the message board or you can send them directly to me at: jfalkenstern@mac.com Also, if you are interested, I have a website: http://www.jfmedicalfund.org I thank you in advance. Questions: 1. When hearing your diagnosis, what was one of your biggest fears? 2. What did you do to deal with this fear? At this point, where is that fear in your life now?

 

On 12/9/2006 Sayonarabeat wrote:

Surviving and Living with Leukemia: Hello, I was diagnosed with leukemia on December 3, 2003, (AML M4eos), at the age of 24. I went into remission after my first round of chemo and had to continue with four more intensive rounds of chemotherapy until May 2004. September 2005, I was getting my monthly blood work check up and my White blood cells had dropped drastically to 1.4. I had to have an emergency bone marrow biopsy. First I was told I was clear, but then after the molecular test, FISH, came back, it showed there were 5% leukemic cells. My only option at that point was a bone marrow transplant. April 5, 2006 marked my new day 0. I now have male blood in me. The labs call to ask if I am a male. I am on month 7 post transplant. For years, I have been trying to graduate. And leukemia keeps putting it off, but I keep fighting it back. For my final project at my school, Eugene Lang College in New York city part of the New School. http://www.lang.edu, I am compiling information from people with leukemia who are surviving. You can be in the middle of treatment, post treatment or even pre-treatment. I would like to first put this on message boards and see the response I get. I have read a few books over the past few months on leukemia-patients, young patients, people who have watched their loved ones die from this disease, the 60 minutes News reporter who passed away recently, Ed Bradley. There is also Mary, from Peter, Paul and Mary who had a bone marrow transplant over a year ago. I have realized how little information is really out there for the patient and even for the world. I watched the 60 Minutes episode on Ed Bradley after he passed away and I was angry of the reporting. This is a journalistic video of someone’s life and there was not even five minutes to teach what leukemia was or how it affects someone. It usually is just said in passing, “an infection, the person could not fight.” But there is so much more than that. Some of my friends didn’t even know what a bone marrow was, didn’t even know they had this thing in their body called a bone marrow. It is important to teach and learn about leukemia but it is also really important to have more people’s voices heard who have had this disease. These personal stories are reassuring for the next person who is diagnosed in helping him or her get over their own fears or learn to control them. I see the research of finding cures for cancer important so people do not have to go through the things we’ve been through. But more than that, there are people going through this. We need to look inside ourselves to deal with the subjective feelings this disease gives and gave to us. That is exactly my focus. In ending, I want to use one of my favorite quotes from Carl Jung, “Who looks outside, dreams-Who looks inside, awakens” If you have the time, I would really appreciate these questions answered. You can answer on the message board or you can send them directly to me at: jfalkenstern@mac.com Also, if you are interested, I have a website: http://www.jfmedicalfund.org I thank you in advance. Questions: 1. When hearing your diagnosis, what was one of your biggest fears? 2. What did you do to deal with this fear? At this point, where is that fear in your life now?

I am writing on behalf of my husband:

1. The biggest fears was coming to terms with the understanding that I may not be there for my family and that the future was going to be tough. 

2. I stayed close and held my family so close and we just hung on- we did go through a lot of prayers and support of extended family.  We are now fighting our third (fourth if you count the bone marrow transplant) bout of cancer (AML).  We have three children and life is dear.  We still have the same fear but we try not to entertain the cancer but entertain our family.  We no longer fear the cancer but embrace what it has brought.  There are tough days of course- but we try not to give it more power than what it already has.  We do a lot of visual imagery and sharing and that does our souls so well.