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NH Follicular Lymphoma neurological disorder.

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(edit* money will go toward getting to and from doctor visits ,mobility equipment,installing grab bars in the house ,and as I'm without my job ,help with household expenses while I try to get disability .none of my doctors at this time seem to want to help me .I have finally gotten an appointment with a refurral neurologist Sept 16th , hopefully get a diagnosis and some treatment soon ,after over 5 months of fear of not knowing what is happening to me and waiting and no help.) Hello I am 48 years old(now 50 years old),I have a wonderful 23 year old Daughter,that means the world to me,I have a Mom that loves me,also a boyfriend and his 8 year old son and friends who I would like to be here for as long as I can be,to try and stay as healthy as I can be to fight this disease .I work hard to try and support myself, it is also extremely hard for me to ask for help,especially from people that I may not even know. November 30th 2017 I went to the ER after work,I had not been feeling well for several months. After having went to the walk in clinic on 2 other occasions with no help,I decided one more time. I went in thinking I had a UTI,a flu bug and at the most gallbladder issues. After taking my blood I found I was seriously dehydrated,quickly hooked up to IV fluids and after receiving my urine test results ,found I did have blood in it,I was sent for a CT scan .After waiting for a very long time,I was told it appeared that I had cancer .As it turned out from my blood work and the CT scan showed an extremely enlarged spleen and enlarged liver . Then was told I had to be put in an ambulance and taken to the University of Iowa Hospital,where I stayed for 3 days ,underwent more testing ,scans, pokes and panels of many doctors . Finally I was sent home to receive further treatment and explanations of what I had ,with an oncologist closer to me. Waiting for answers was extremely hard over the next few weeks ,but finally I had my diagnosis , stage 4 Non-Hodgkin Follicular lymphoma.This cancer shown 40 % in my bone marrow ,mostly in my entire spleen and random lymph nodes ,this was discovered after a PET scan,bone marrow biopsy ,removal and biopsy of 2 nodes from my groin/hip area. It is now February 23rd 2018,I have had 2 chemotherapy treatments,I do one treatment of Bendamustine/rituxan(monoclonal antibody therapy) on day 1 and day 2 Bendamustine(chemo drug ) only .I will do this every 4 weeks ,and weekly blood work for 6 months ,and then after (at this point) rituxan treatment maintenance for 2 years after. There will be another scan after the 3rd month of treatment ,to see how treatment is killing the cancer,and then depending on results ,go from there .   This type of cancer is not curable ,it can only be held at bay ,keep knocking it back ,sometimes it will go dormant for a time if you are lucky,and then you must start treating and fighting it again.   When I left work for the ER that last day in November,I never imagined that this would be the outcome .You cant prepare mentally or financially,especially when you're already struggling.  I missed out on a lot of work time,with doctor appointments,and testing schedules.Then In February I was out of a job,due to the restaurant I worked at being sold.I was promised a job back but not until March. I have a long road to carry this cancer down ,many trips to the doctor,many blood tests and future scans and chemotherapy treatments .The cost of these treatments,and all that I have been through since November,are mounting .I would appreciate any and all financial help from you and people you may know,also through thoughts of positivity and prayers to help me continue the fight against this disease . I am on medicaid /low income,I struggle but I always try to do it on my own,this time I will ask for help. Thank you so much !

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DEBRA GARRETT
Organiser

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