Story about Vasculitis .

My survival

Jun 8, 2016

By: Marilyn


Diagnosed with breast cancer 3/8/2013 masectomy chemo.I was sick 12/2/14 drs said hayfever.I coughed up blood , fevers,pain in chest., breathing difficulties.lost weight 14 lbs.in 3 weeks.blood in urine.I begged pcp dt n oncologist for xrays of chest told I dont hear anything I said u dont hear cancer.Went to urgent cate 3/3/2015 dr did xray told me cancer back lung full.Called oncologist nurse practitioner ordeted needle biopsy per dr .Did it told it wad lost.Daughtet took me to Oklahoma City,Oklahoma.pet scan needle biopsy of lung.told lung cancer in trachea lungs lympnodes.wanted to do surgeries..scared I left called CTCA they saved my life did pet scan ct scan lung surgery, removal of half lung n 2 nodules.Results Wegeners gpa, Vasculitis disease. Surgery 7/6/2015.Saw rheumatologist September.He didnt want to start treatments at that time prednesone 60 mlgs a day.then December sick again did 2 rotuxan infusions 2nd one had allergic reaction.swelling slits open bleeding after 3 hrs of infusion i told nurse take me off call oncologist or other dr she said they are with patients.If I take you off we start over 4 1/2 hrs finished2we took pictures of my hands while on infusion.I couldnt see drs after done came home called swelling more ankles ,fingers, tops of feet, face ,eyes hands fingers.i called nurse It was Monday Wednesday I called again she said dr hasnt gotten back with her Friday morning I called again he ordered a water pill by Sunday morning swelling gone.My pulmonary dr was furious when I saw him.put me on antibiotic n antibiotic cream for fingers n toes where slits were.took over 6 weeks to heal.he said he would talk to my 2 drs n nurses in chemo room.no more rotuxan.Then 3/7/2016 cytoxen chemo had 2 ,next one 6/8/2016.This has been a hell journey for me.I pray to God to keep me strong and try for healing remission.Not giving up.Thankful for my Drs and God.Thankful for vasculitis foundation disscussion group.I get support help love encouragement from them friends I talk to who understands like me.

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