Acute Lymphoblastic Leukemia

I wish I could be posting that my scans were clean. Unfortunately my cancer has relapsed. They found a mass on my right kidney and involvement in my bone marrow. My doctor was surprised. My type of lymphoma doesn't usually present that way. While doing the biopsies it came to the attention of my doctor that I was misdiagnosed in Chicago. I've had acute lymphoblastic leukemia this whole time. Imagine our surprise.

My treatment is one huge high dose chemotherapy round called the LARSON protocol. The goal will hopefully put me back into remission. They are hoping that I could be out of the hospital by Christmas. Once I reach remission, and I will, I need an allogenic bone marrow transplant. Kathleen was tested to see if she could be my match. They told us today that she's only a 50% match. I now need to be put on a transplant list and hope they find a better match. The side effects will be similar as before. It doesn't sound pretty. The doctor was pretty blunt. The chemo will be rough. The transplant is scary.

I have a 80% chance of surviving the actual transplant,and 50% overall. Then the huge long list of complications and infections begin again. I will be in the hospital for 2-3 months. Then depending on my immune system, in and out of the hospital for the next 6 months.

I spent the first week after finding out researching everything I could. I quickly stopped. There is only so much I need to know right now. Statistics can be a real downer. I have cried, laughed, made too many bad cancer jokes, and now I am sitting in my hospital room. They have finally trapped me long enough in one spot to actually write something.

The staff here at the IU Simon cancer center is incredibly nice. They really had a hard time getting my central line started. It has been along time since I've had an IV line attached and it hurts.

I am sorry it has taken me so long to write anything. I am in denial. It is a positive to know what meds work this time around but it sucks that I remember how much medicine it took to attempt to keep me going. It is hard to imagine going back to that place. It seems like a bad dream. I would love any and all thoughts, prayers and positive energy thrown my way. I could use it. It was so wonderful to hear from people on the blog, letters, and phone calls.

Thanks
Andrea

PS: Kathleen did a wonderful job of decorating my room. Very festive. Please note my mothers diet coke cans already. Also note the extention cords that are not up to hospital codes. Dad is so proud.