At that appointment, the surgeon came in and poked and prodded around on me. Very point blank, he looked at me and said, "The good news is I don't think you have breast cancer. The bad news is I think you have some type of lymphoma." I had no idea what lymphoma was but it sounded scary.
The next day, Tuesday, I had a biopsy done which removed some lymph nodes from under my left arm. After the biopsy, the surgeon went out and told my husband and mother in law that it went well and that I did have lymphoma. I was scheduled to see an oncologist the very next day.
The oncologist told me that I had Non-Hodgkin's Lymphoma, specifically Follicular Small Cleaved Cell Lymphoma. It evidently was a very slow growing, or indolent kind. Mine was labeled stage 4, grade 2. I had this for a very long time without knowing it.
I was sent to a second oncologist for CT Scans and more specific staging along with a bone marrow biopsy. That BMB showed significant bone marrow involvement meaning I had many cancer cells in my bone marrow. I was sent back to my original oncologist with a recommendation for treatment.
This started my 5-year journey. I've had many treatments and many milestones during these 5 years. The following is a timeline of what treatments I have had and milestones I have reached during this time.
• January 2000 I started a 6 round course of FND (Fludarabine, Novantrone and Dexamethasone) I would receive the chemo on 3 consecutive days once a month. During this treatment I continued to work only taking the week off that I got treatment. I also shared my story with my listeners, as I needed to explain to them why I would be taking a week off once a month for the next 6 months. I also began writing a series of newspaper articles in the local paper. I did not lose my hair with this treatment but it did thin out a lot. My husband and I moved in with his parents because we had no idea if I was going to be sick or not during this time. I was only mildly nauseated, no vomiting, but some smells would make me feel sick to my stomach. I was tired a lot and rested as much as possible. Since my job started at 5:30 am and I was done by noon this was easy to rest when I needed to. My treatment was postponed twice during this time due to low blood counts. I finished my treatment in late July 2000. The local oncologist told me I was in remission following a CT Scan. No Bone Marrow Biopsy was performed at that time.
• August 2000, for my birthday, my husband took me to Branson for a day of shopping and we stopped at Shoney's for dinner on our way home. While I was getting my food my husband kept looking at this woman standing near me. He had arranged for my sister, who I hadn't seen in over 20 years to meet us there and surprise me. I was so happy and my husband was the best for doing this for me!
• In November 2000, my brother in law was involved in a serious car accident in which he broke his neck and was paralyzed. We took in his 15-month old daughter to care for and I quit my job to do that. We kept her for 3 months, the time my BIL was in the hospital.
• February 2001, A CT Scan showed significant growth of lymph nodes. The beast was back. My veins had become very bad during the first course of treatments so the decision was made to have a Port-A-Cath surgically inserted into my chest. It feeds directly into a vein and is now used for all my treatments. It truly is my best friend.
• March 2001, started a course of Rituxan, a monoclonal antibody used for Non-Hodgkin's Lymphoma. I received one treatment once a week for 4 weeks, but was unresponsive to the treatments.
• May 2001, started a treatment called CHOP (Adriamycin, Cyclophosphomide, Vincristine and Prednisone). These treatments were harsher than the first course. I received this one day a month. My blood counts dropped very low and the oncologist delayed my treatments several times. I received only one treatment from this oncologist. My hair began falling out very quickly.