This week has been all about preparation and my family has been an important component in my preparing for the BMT. My mother and I went for our tests on Thursday while my siblings got tested last week to see who is my best match and essentially who will give me a chance at a better quality of life. We will know the results in approximately 10 days. I am so grateful for their support and understanding in all of this. I realize they are making great sacrifices as well and that speaks volumes to their characters.
We also met with a social worker because I will need 24/7 care. As a nurse my mom works Monday, Tuesday and Friday so those are the days we need help. So far my brother has committed to Monday and my mom will give up her Friday's temporarily. Now we must find someone for Tuesday. Wish us luck.
Additionally, I received my timeline for the transplant. I have received many questions about the timeline and when I will have the BMT so I hope this helps. A negative (-) sign in front of the day means a day before the new healthy marrow is transplanted into my bone, with that day being Day 0. It will look something like this:
Day -9 to -7 Drug ATG administered (experimental;believed to assist with the body accepting the new marrow)
Day -6 to -5 Chemotherapy A
Day -6 to -2 Chemotherapy B
Day -1 Anti-nausea med and Total Body Radiation (TBI)
Day 0 Bone Marrow Transplant
Day +3 to +4 Chemotherapy A
Day +5 Immunosuppresive medication and growth factor administered
Day +60 Bone marrow biopsy
As you can see it's approximately a 2.5 month process.
Once the drug ATG has been approved and then my insurance approves the entire process, we will begin. I am anticipating the beginning of April for Day -9. During the month of March, I still have to discover my donor, we both need to have a bone biopsy (http://www.youtube.com/watch?v=E1hdCYNgUUQ), finalize my 24/7 care, blood work and other pertinent tests.
Peace and blessings,
C. Madry
Saturday, February 28, 2009
Tuesday, February 10, 2009
I just want to be normal.
Today I had my second doctor's appointment with Dr. Brodsky at John's Hopkins in Baltimore. I went in there knowing that he was going to suggest I wait to go through with the bone marrow transplant. I have been thinking over the past couple of weeks what I could say to him so he could understand my convictions to move forward now. Once I sat in that room the words simply flowed effortlessly...
I understand my life is at risk and the severity of the bone marrow transplant. I have watched every video on YouTube, read every wiki article and have had many conversations with friends since our last meeting on November 18. I've even read cancer blogs, one of my favorites being crazysexycancer.com, trying to evaluate the extremes the chemo will take my body through. Through all of my research, anxiety attacks and breakthroughs, I still have the same outcome -- I just want to be normal.
I don't want to start another job, relationship or friendship explaining how I have Sickle Cell Anemia and if I disappear for 1 or 2 weeks it's legitimately because I'm sick and in the hospital. I don't want to explain how I prefer not to have visitors when I'm in the hospital because I don't want people to remember me like that. I don't want to have to wait to go swimming until June because the water is too cold on Memorial Day weekend or that I can't be in a house without air conditioning in the summer or a house without heat in the winter due to the restrictions of this disease. I don't want to sneak out of a friends house in the middle of a night to find a hospital because I pushed myself too much thinking I was normal. And I especially don't want to explain how I never feel comfortable being more than 4 hours from my mom, the only person I can truly depend on when I'm at my worse.
"I just want to be normal doc", is what I told him and once I added a few tears, he somehow seemed to get it. So now I'm preparing myself to physically endure the unimaginable -- to attain what so many take for granted -- being healthy, and I'm prepared for any outcome in order to reach my goal.
This week I was reminded of mortality with the passing away of my spiritual brother, Nassan Yitzchak Ben Israel. He was only 31 years old. Since I learned of his passing, I cry every night for him but I know he is in a place of freedom, love and righteousness. It is my own selfishness that motivates me to cry for him, wishing I could have had one last conversation with him and knowing how senseless his death was. Should my fate truly lie in not making it through this procedure, I find comfort knowing I will have a good friend to be with on the other side. I will make it through this though, so please don't worry. I am strong physically for what my little shell of a body has been through and I will become even stronger.
I thank everyone for the words of encouragement and look forward to the results of what the next 6 months will bring. Let's do this...
C. Madry
I understand my life is at risk and the severity of the bone marrow transplant. I have watched every video on YouTube, read every wiki article and have had many conversations with friends since our last meeting on November 18. I've even read cancer blogs, one of my favorites being crazysexycancer.com, trying to evaluate the extremes the chemo will take my body through. Through all of my research, anxiety attacks and breakthroughs, I still have the same outcome -- I just want to be normal.
I don't want to start another job, relationship or friendship explaining how I have Sickle Cell Anemia and if I disappear for 1 or 2 weeks it's legitimately because I'm sick and in the hospital. I don't want to explain how I prefer not to have visitors when I'm in the hospital because I don't want people to remember me like that. I don't want to have to wait to go swimming until June because the water is too cold on Memorial Day weekend or that I can't be in a house without air conditioning in the summer or a house without heat in the winter due to the restrictions of this disease. I don't want to sneak out of a friends house in the middle of a night to find a hospital because I pushed myself too much thinking I was normal. And I especially don't want to explain how I never feel comfortable being more than 4 hours from my mom, the only person I can truly depend on when I'm at my worse.
"I just want to be normal doc", is what I told him and once I added a few tears, he somehow seemed to get it. So now I'm preparing myself to physically endure the unimaginable -- to attain what so many take for granted -- being healthy, and I'm prepared for any outcome in order to reach my goal.
This week I was reminded of mortality with the passing away of my spiritual brother, Nassan Yitzchak Ben Israel. He was only 31 years old. Since I learned of his passing, I cry every night for him but I know he is in a place of freedom, love and righteousness. It is my own selfishness that motivates me to cry for him, wishing I could have had one last conversation with him and knowing how senseless his death was. Should my fate truly lie in not making it through this procedure, I find comfort knowing I will have a good friend to be with on the other side. I will make it through this though, so please don't worry. I am strong physically for what my little shell of a body has been through and I will become even stronger.
I thank everyone for the words of encouragement and look forward to the results of what the next 6 months will bring. Let's do this...
C. Madry
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