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.