Living with a Rare Blood Cancer: My Story

hi I'm new here . just wanted to give y'all some background on myself. I was diagnosed at age 5 with an extremely rare blood cancer (as doctors called it back then ) the docs at UC Davis in California had never encountered this blood disorder. they were sure I would never get better and told my mother to say her goodbyes. I remember this horrible night so long ago like it was yesterday. I was allowed ice cream which I hadn't been allowed to eat anything for the better part of 3 weeks as I was unable to eat without vomiting blood clots everytime no matter how small the meal was. I was allowed out of my glass room to ride a tricycle down the halls of the peds ward and a nice nurse help my mom bath and dress me and braid my hair she had mom tell me a story and kiss me good night and I was put to sleep .I was terrified I was dying and would never see my family again . to my surprise I woke up the next morning to my mom laying next to me praying to God not for my health to return instead I heard her say God she's your child ,I'm but her earthly mother I understand if heaven needs her back she belongs with you so I you must please spare her the pain and take her home quietly and quickly. mom mom left the room sobbing she didn't know I had be awake and I couldn't holler for her as I had tubes down my throat. with in a few short hours I had something like 20 blood draws and was quickly taken off the tubes and moved to a room with other kids. my mom was coming to get me . yes it seemed I was going to be fine doctors had no explaination for it but my blood was completely healthy at 9am when I was moments from death at 630 am that very morning. this was my first polycythemia episodes. my second full episode was very long after . I never thought I was sick sure my skin itches when it was exposed to heat to the point even covering up with my blanket at night would cause me to get in trouble for moving around keeping my sister who slept on the top of our bunk beds awake for hours I was constantly having very violently puking episodes and Infront of hundreds of kids at school during ensembles and at science camp during chow . and even while walking the stage at my college graduation at 27 years old . I often felt like I was stuck under water and couldn't catch my breath. I couldn't stand the heat of summer and every year ended up sick and inside as my siblings enjoyed the sun and fun. it has just been my life then when I turned 30 I was at a baseball team party with two of my son's who were on the same team we were playing around and I jumped in to the swimming pool after the two of them and couldn't get back out I was drowning . suddenly their coach was giving me mouth to mouth and I was being rushed by ambulance to the ER. where for the first time ever I heard the words polycythemia Vera . and at that moment I knew I had been living with this killer blood cancer unknowingly for over twenty years . and the oddest part was finding out they still rarely saw it and especial not in an otherwise healthy 30 year old mom to 6 . I've since had to do blood letting every 9-12 days depending on my blood tho less. as well as an aspirin regiment every day for the last 15 years but I'm finally feeling like knowing what exactly is happening with my body and why I always was so sick and why nobody knew what was wrong with me . nobody knew really cuz it's so rare. life tosses some pain and nausea at me more often then anyone wants but I'm special I'm rare .. I'll share the story of my fractures humerus shaft later on. thanks for reading this far.