living with Follicular Lymphoma 5 years

grace_2011

I saw my first physician with pain in my left side in 2007. The ultrasound revealed my spleen was swollen. My doctor said spleen's do that when a body is fighting off infection. I asked if I could see a specialist and she said that wouldn't be necessary. I found another primary and after my gallbladder was taken out I became sicker and sicker. My hair started falling out. I live in Florida and could never get warm. I would drag myself to work each day and sleep in my car at lunch to make it through the day. By 8:00 pm I would be asleep and the would go through the same routine. I had pain in my side and my right armpit area. After tests for lupus, Epstein Barr and varioud other diagnostic tests I felt a huge knot in my left abdomen area. He requested an ultrasound and the radiologist remarks were the mass had grown since 2007's first findings. On October 27,2010 my spleen was removed. I had four laproscopic incissions and a 9" incision down my abdomen. When my physician visited me in the hospital, he stated it was a big as a baby. I got pneumonia after surgery. I was home for 6 weeks and was happy to get back to work, hopeful I could have a good quality of life again.
After two weeks back at work and the nausea and vomiting continued everymorning as I was driving to work, I received good news from the Pet Scan. The nurse said the findings were clear and no evidence of cancer. Thirty minutes later my Oncologist called and apologized I had been given incorrect information. I was told I had follicular lymphoma. I visted Moffitt in Tampa and two weeks later was scheduled for 6 rounds of R-CHOP.
My employer was kind enought to let me work emails from home through the chemo treatments. It was hard, but I am the primary breadwinner of our house and could not live on STD income alone.
Most recent, I have had severe periphial neuropathy in my legs. I cannot walk most days. My physician stated I am depressed. I am depressed, but with counseling and how I am going to go forward with this chronic condition is taking some time. The R-CHOP has left many adverse affects in my body. I have horrible headaches, my legs feel like icepicks are stabbing them, A tooth fell apart after the second treatment and although the dentist placed a temporary filling in, I can't have the bone graft to repair the damage until all my treatments are complete in February 2013. I have a chemo induced cataract in my left eye. I cannot have cataract surgery until after my last treatment in 2013.
My physician's do not understand how I feel in my body on any given day. Follicular Lymphoma is a terrible thing. My immune system is gone. I'm horrified of germs. I was always a social butterfly and now live a reclusive life. Living with Pain, Chronic fatigue and not being around other people the way I once was able to has truly been an adjustment to my life.