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Exertion headache 11/3 followup story
Hello everybody-
You don't know how happy I am to coordinate to put these words down here. And it seems noone quite understands, but possibly most of you will. I wrote here on the third that I was getting exertion type five second headaches just one to five a day and it would go away. I had been exercising to keep my estrogen levels down and had become more active lifting things because after two years of this Stage IV diagnosis I thought I was feeling okay and last month my liver and pelvis ct scan was excellent. Just when I let my guard down, things started up again . I spent the week trying less exercise and I had a microwave rice pack on my neck feeling better and I felt like it was going away . But by Monday the third I called my oncologist just to make him aware because the headaches though infrequent were strange things that I never experienced before. He told me that he didn't think it was related but given my history he wanted me to have a CT scan immediately. The next day, on voting day I got my CT scan and waited to hear.
On Thursday 10pm at night, my oncologist calls me to say that I have to get to the local emergency room that night for a MRI because there was possibly bleeding, swelling, and tumor, or tumors in the back of my brain. I said to him I had been feeling better with the stupid rice pack heat and feel it must be muscular. He said no, it has to do with your cancer. So, my husband just returned from closing at work and we went to the emergency room. I was at the local Kaiser hospital for three days while I heard various scenarios. They gave me decadron IV and by Sat I was feeling better, but there was a brain mass in my cerebellum at first 2cm then at surgery 3cm in size. My oncologist doesn't work the weekend so I had unfamiliar people coming in and telling me stuff from-"we don't have to cut it out-you will have whole brain radiation and you know if it grows back there is nothing that can be done" An internist telling me that there are no blood brain barrier crossing chemo drugs that are fda approved(I swear I read somewhere that there was)Then they tell me its easily accessible to cut out and they will be transferring me to Redwood City or Sacramento Ca whoever will take me for the neurosurgery. I didn't know that Kaiser sends people to different places for different procedures. So, here I am in an unknown hospital with doctors who I didn't feel confident with since I couldn't get a straight answer ,and you are never as alone and scared as that. So that Sat. night I am transferred to Sac, and the night dr, an internist comes in to see me to say "no eating or drinking after midnt, because you are being operated on tomorrow" And I say to him, since when are things done on a Sunday and don't they have to show me a scan or tell me the procedure first?So, I got to talk with him a bit and his responses were that he is an internist with some oncology training and there has been medication FDA approved to cross the blood brain barrier but to how effective it is he doesn't know. And that in some cases you can get a localized area of radiation and after a period of time can go back in if there are more tumors seeds (All I want is a little glimmer of hope) Anyway. then on Sunday the surgeon strides in- looking like a college 36 year old cocky kid. And says to me that its not easily accessible, its in a horrible position in my cerebellum between a main drain of my brain and the brainstem where I had no alternative to surgery because within a few weeks to as month my drainage would clog and or my conciousness would go from the brainstem swelling and hydrocylphallus (spelling sorry)would set in. So, I sighed the surgical consent form with my alternative written down as "observation until death". And he didn't tell me anything positive about the surgery either ,saying its like being on a bus and he has to let me know it could crash. That although it doesn't look attached from the scan of what he could see, the backend could be twisted around or gloomed on to some shared blood vessels with other parts of the brain and I would wake up from the surgery with having a stroke from some uninvolved area. I was operated on Monday 11/10 from presurgery room at 10:45 am and woke up at 7pm with thankfully all my wits about me ,felt like a cement brick was hanging off the right side of my head,and was discharged from the hospital on Friday night 11/14 but I don't know what the future holds for me or who to trust in this battle to maintain a life. Right now I am in the decadron steroid zone where they are weaning me off the meds and I hope my jarriness is temporary. Monday the fight starts again. .....I am sorry this is so so long but I had to get this off my chest somehow --maybe it will make me feel better....
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