Non-Hodgkin's Lymphoma Survivor
My story and subsequent health difficulties, have been an enormous challenge, but one I hope that will inspire and encourage you as you read on about my journey (www.jodiesjourney.com) My grandmother (now passed) prayed with me in her Sydney kitchen when I was 13 years old. 20 years later - At 33 (January/05), I faced the largest challenge of my life, but I didn't yet realise it.
Here is my story: I had been getting occasional pain down my R arm and I had felt run down and tired for some time, but having a baby and a disabled daughter always seemed to account for this. (November/05) I found a large lump in my R breast. Concerned it was breast cancer, I arranged an immediate check at a specialist breast clinic. I was told it was just a reactive lymph node, due to infections and that there was 'nothing funny going on'. I had been catching more illness than ever before and it was assumed this was the reason for the enlarged nodes. In retrospect, we now know that my immune system was breaking down and I was not able to fight off infection. The enlargement of my nodes was part of the greater problem. The cycle continued in pursuit of a diagnosis: 11 months of searching; seven doctors; 21 doctors visits. I could get no assistance & no-one would listen to me. I continued working full-time, as I had no answers and people around me, started to question my symptoms.
One morning - at a ladies camp, I woke to find numbness and sciatica in my right leg. Finally, after a week of no sleep, terrible pain and little relief, I said to my husband, If I still feel pain in the morning, I'm going to the ER for help. An ER senior doctor decided to do a CT scan 'Just in Case'. What was revealed would shock and distress the doctors, nurses, myself and my family. I was immediately admitted, in complete shock. That night, a young doctor came to tell myself & my family what was happening & what they had found. I will never forget her words: 'I have been chosen to tell you what we have found' (in other words, she got the short straw!). 'You have a mass in your back causing your pain and sciatica; its eating into your spine and pushing into your sciatic nerve, hence your sciatica. We don't know what it is, or where its come from, but we think it's probably malignant'. I remember pleading and crying with this woman to tell the other doctors to work hard to save my life, because (at the time of diagnosis) I was only 35 and had two small children to live for.
My final diagnosis was Follicular Non-Hodgkin's Lymphoma, B-Cell, low-grade, stage 4. The very last stage. I was later to find out that I had Lymphoma eating into bones, nerves and muscles in a large amount of my body. The pain in my R arm/shoulder was identified as bone pain from Lymphoma. The process of treatment then began: seven weeks of hospital as an in-patient to start with (all up 10 weeks inside during my intial treatment); biopsies, tests, MRI's, scans, x-rays and then radiation and chemotherapy.
Two weeks of emergency radiotherapy to save the function of my right leg; six rounds of systemic chemotherapy and eight rounds of a special Lymphoma antibody; nine months of wearing a Hickmans catheter (for withdrawal of bloods/delivery of chemo). My hair fell out twice. I went through two stem cell harvests and much fatigue and heartache. It seems amazing looking back, that I was able to endure the 11 previous months working, looking after the kids and home, all while my body was being ravaged by the Lymphoma and I was desperately trying to get help. Two years, post diagnosis and treatment, my former GP was disciplined by our state medical board for not performing to expected medical standards, set by our state board for all doctors. I may have been diagnoised sooner, had these standards been met. This was a long process and took me (on my own) 2 years of active discussions, investigations & consultation by the medical board, regarding my experiences and the difficulties I experienced in trying to get a diagnosis. In the last 4 years, I have had over 63 treatments of chemotherapy and other drugs, been in hospital thousands of hours, had a device (port-a-cath) and Hickmans implanted in my chest and also been a blood and plasma receiver many times.
Due to the extensive state of my intial disease, I have been advised that I am medically incurable and I may require a stem cell or bone marrow transplant in the future to stay well. As I continue to fight and remain positive, my aim is to believe for a long and disease free life, regardless of prognosis. I went into remission in March 2007 and fell back out of remission in January 2008. My right leg function was saved again after relapse and my current status is uncertain. Much of my original recovery can be attributed to some big prayer and amazing hematologists at my hospital in Australia.
I am now currently working on health reform and Lymphoma awareness to prevent others from enduring the nightmare I went through. I want to change the system so that people world-wide have safer GP visits and faster diagnoses. I have recently been talking to government officials to suggest ways to make our system better at detecting blood cancers, catching them earlier and supporting carers in crisis. My hope is that many people will read my journey and understand the signs/symptoms of blood cancers and get motivated to support health reform. I want people from all backgrounds to be encouraged by my journey. I enjoy every day and appreciate all that I have. It is a miracle that I have survived.
I am currently preparing for an Autologous Stem Cell Transplant, due to relapse #2 (3rd cancer incidence).