Submissions to "Patients' Stories" cannot be verified for their accuracy.  They do not necessarily represent validated medical research.  The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.

I was 39, almost 40 in the spring of 1995 when a blood test prior to a biopsy for another health issue, revealed very low WBC, RBC and platelets. The surgeon called me in to palpate my spleen and quickly surmised that it was quite enlarged. The biopsy was put on hold; rather he referred me to a hematologist. I recall being thankful that I was seeing the hematologist part of my physician and NOT the oncologist.
Several tests were run, but nothing conclusive was found. For years I had experienced excessive sweating, fatigue, etc., but figured it was normal for me and that I would have to live with these symptoms. More recently the fatigue had worsened. Unlike the typical HCL patient I had been gaining, rather than losing weight. I remember going to the gym, working out, coming home to shower and dress and having NO energy remaining. I was also experiencing more bruising than usual, but I chalked that up to getting bumped at the gym. I was trying to start a career in real estate and was still very busy being the mother to two teenaged boys, a 12 year old girl and a 9 year old boy.

HCL leukemia had been mentioned as a remote possibility from the beginning of my visits to the hematologist. My Dr. felt certain I did not have this rare disease, but for lack of a better diagnosis, he performed a bone marrow biopsy. You know the rest of the story....70% of my WBC were found to be affected. I was given 2CdA for one week via a pic line in my arm. I thought I was getting off cheap when the fevers began. I was hospitalized only to get much worse. I swelled up almost overnight (my kids likened me to Martin Short in "Pure Luck"). The neutropenic fevers were miserable. I found I was allergic to Cipro and Venkamiacyn. The itching, swelling and fevers and complete lack of appetite continued until I was removed from both medications. During my week in the hospital a nurse suggested that the pic line might be the source of infection. I begged my Dr. to remove it. Against his better judgment he ordered it removed only to find that it was not infected.

My veins were very difficult and another line was inserted beneath my clavicle.   To be honest, I have never felt as well as pre-HCL.  In the spring of 2001 I noticed excessive bruising on my chest--not a typical place to bruise. At the urging of my daughter and husband, I went in for blood work and found that HCL had returned. I was treated almost six years to the day of my original treatment. This time however, I was treated with leustatin (another name for 2cdA), in the hospital. I was given neupogen from the start and avoided much of the misery I experienced the first time.  My counts bounced back sooner and higher than the first time.

I continue to struggle with fatigue, etc., but feel very blessed that there are such great treatments for such an obscure disease.  I am also blessed in that I don't worry about HCL returning or even of dying.  However, I think my experience has heightened my awareness that I need to do and experience important things NOW.  I am now a grandmother and only two of my children are still at home.  My real estate career is more established and I have learned a lot from my experiences with this disease.