I found a very small lump behind my ear in the summer of 1993. The doctor had it biopsied, determining it was NHL. I had never had a symptom, other than the lump. When I heard it was Lymphoma, I thought it was a death sentence. I was devastated. We began radiation, I don’t even remember for how long (I am told now I probably have chemo brain to some degree), tests were done and it was determined I was in “remission.” In 1998, I found another lump in my groin. Chemo pills were prescribed, and again I was declared clean for the time being. Then in 2002 I came out of remission again. At that point, my oncologist and I talked about the autologous stem cell transplant. After consultations, etc., I was scheduled for the transplant on May 6, 2003. I entered the hospital April 28 for a regimen of total body irradiation and chemo to get my white cell count to zero, then was given my harvested cells. I left the hospital on May 19, not feeling much better than I had all the while in the hospital. It took a very long time to recuperate, and in that time I retired from my full time job.
Again, I came out of remission, and went on a regime of Rituxan, which is a monoclonal antibody, similar to chemo but doesn’t destroy the good cells. And since then, I have been in remission, thank you God.
I remember first going to my oncologist who had told me of a woman who had been in remission for a very long time, and here I am going on 20 years. Not sure if this is helpful, but anytime someone would like to talk to me about it, I would be more than willing to give support.
One more thing I would add. Do what you love, if you can. I am a musician, and play the piano at adult homes, children’s homes, bars, church, anywhere. I wasn’t able to do this until I retired, so in a way I have the Lymphoma to thank changing my world.
Thanks for listening to my story.
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