2014 starts here
I have had anemia for many years and the doctors always told me to just take folic acid and that was all I needed to do. I have been pretty active most of my life.
I had taken a new position as a director of a treatment facility and when I started getting fatigued I mostly chalked it up as stress from my new job. I had a routine physical and when the blood work came back my primary doctor set me up with a hematologist letting me know that some of the numbers that he was seeing were a concern.
I went to see this oncologist/ hematologist and he did some more blood draws and in addition to an ultra sound, to check for spleen and liver enlargement he also ordered a PET scan. All that came back normal. Meanwhile between the co-pays and the insurance deductibles I was also having a pocket book ectomy performed. Back to the story. Eventually they did a bone marrow biopsy. This came back with a diagnosis of low grade B-Cell Lymphoma. Damn I got cancer !! Well my doctor wanted me to see another doctor, a lymphoma specialist, for a second opinion.
This doctor has a reputation of being great at what he does. No bedside manner, all business, and according to my nephew’s wife, that works at the hospital, that’s the guy she’d want. Anyhow I go in with my wife for a 2 hours marathon appointment figuring they would order some treatment. Wrong ! He said that my case is complicated. He said that he needed to send my biopsy samples to Cleveland for an expert pathologist to read.
So after the appointment I was getting the drift that the possibility existed that I didn’t have cancer. So I asked the doctor if this was a possibility and he said, “Yes.” Wait another 10 days. There has been a lot of waiting with this experience. I’m a patient with no patience. Anyhow, he finally gets a hold of me and said that I didn’t have cancer. “That’s great I said. ” Then he said, “You are still pretty sick” and he gave me the diagnosis of Cold Agglutinin Disease. I had never heard of this before. When I told anyone that asked me about my health issues they didn’t ever hear of it either.
My doctor ordered 7 days of Predisone followed by 4 infusions of Rituxan I have actually developed more symptoms while undergoing treatment. I have had some poor circulation before but now my feet feel cold although they are warm to the touch. I have shortness of breath and nausea. I thought that these were Rituxan related but my doctor said that these were more symptoms of the disease. I have also been told that it may take up to a month before the benefits of the Rituxan treatment may be noticed.
Frustrated I happened on to this site and the face book community for this disease called CADdy Chatter. I am less frustrated, feel less isolated, and have begun my peer driven education. I have stayed grateful by looking around in the chemo room at the cancer center and seeing that although I’m sick others have it worse than I do. I want to be well and will be eventually but I have to be patient and take care of myself. Two things I’m not very good at yet but I’m practicing.
For stories from 2007 (with updates) Stories 2007
For stories from 2008 (with updates) Stories 2008
For stories from 2009 (with updates) Stories 2009
For stories from 2010 (with updates) Stories 2010
For stories from 2011 (with updates) Stories 2011
For stories from 2012 (with updates) Stories 2012
For stories from 2013 (with updates) Stories 2013
For stories from 2014 (with updates) Stories 2014