I wanted to share my story to give HOPE and a voice to Survivors! I had my first child in December 2005 and began having leg pain three weeks later. I was 26 years old and on maternity leave from my social work position. My pain gradually increased and I began going to the doctor and ended up going every week for over a month and was misdiagnosed with arthritis and inflammation. My symptoms progressed to back pain, unable to eat, night sweats, fatigue, weight loss, and much more but I was having blood work each week and getting normal results. A CT scan was order and they found a 4 cm mass on my liver, several on my spleen, and one small one on my pancreas…I was told it was probably a fatty tumor and needed biopsies. The biopsy was scheduled for three months. I started getting sicker faster and could not function within days and couldn’t even hold my baby. I finally started taking the pain meds as I was nursing and didn’t want to before. I was in EXTENSIVE pain and was getting no relief and became bedridden until I went to another facility to an emergency room when I was misdiagnosed again and told I have sciatica nerve pain, gallbladder disease and starting of pancreatitis. I was being prepped for gallbladder surgery when a standard chest x-ray revealed a 10 cm mass on chest wall. The tables turned and I was admitted and seen by an oncologist. I was told to hope for Hodgkins lymphoma. I was transferred to another cancer facility and had every test known to man it seemed..bone marrow biopsy, spinal tap, liver biopsy, scans, labs, etc. I was told two days later the day my baby turned three months old on March 21st 2006 that I had stage 4 Diffuse Large B Cell Non-Hodgkins Lymphoma. I was told a bone marrow transplant was in my future, first chemo and most likely radiation. I was informed the chemo could kill me before the cancer and that i would most likely be infertile after treatment. I immediately started chemotherapy 8 rounds of CHOP-R. After each chemo I was hospitalized in isolation for being neutropenic for about 5 days each visit. I got very very ill with chemo. Seventeen radiation treatments followed and still no remission. RICE chemo followed and then a work up for a stem cell transplant.
God blessed me with two perfect sibling matches. I had my transplant at the Mayo Clinic in Florida. I live in KY and was away from home for three months. All together I lost my hair three different times and developed GVHD, VOD, CMV, and had a code blue. I also developed steroid induced diabetes and had so many problems. My prognosis didn’t look well but I had faith and with prayer, my baby, my brother ( my donor) and a wonderful medical team I walked out of the hospital after almost six weeks and was back to the waiting game and continued in survival and fight mode. Follow up care followed back in KY where was I given wrong lab reports and almost died from toxicity from cyclosporine. I recovered and my journey of fighting continued. God blessed me with my son…the best medicine possible at just the right time, two perfect matches, and a FREE transplant at a top facility because my husbands employer (Wal-Mart) had a specific bone marrow transplant insurance, and an Outstanding brother who was my donor. By the Grace of God I am alive, cancer free, and raising my son. He is 6 years old now and graduating Kindergarten this week and I celebrated my 32nd birthday this year. I will be celebrating my 5th transplant anniversary/birthday May 30th 2012… A few weeks to go! Getting ready to take my fifth Relay For Life Survivor lap this year as well. I have been diagnosed with chemo induced neuropathy as well as fibromyalgia and premature menopause and have a great deal of fatigue, pain, amd weakness. I also have to take meds for nausea and my life is no where near where it was before cancer but is my new normal and i have learned to ask foe help when I need it and take one day at a time. Despite long-term side affects..I would do it all again in a heartbeat…I was told transplant was my last chance for a cure. It was and is worth to be here alive, cancer free, and watching and enjoying my son grow and to experience his “first” and experience the world in a new light, through his eyes and though a survivor’s eyes. Believe me the view is MUCH different! I have a second chance and I always say that each breath we take is a gift from God…treasure it and There is always someone worse off than we are. Songs and scriptures help to get me on track if I let my mind wander in places I didn’t want it to go.There is always HOPE, each patient is different, ask questions and be your own advocate! A positive attitude and faith can take you far. NEVER EVER GIVE UP HOPE!