cat127 Posted November 14, 2007 Share Posted November 14, 2007 i think i hate the roller coaster part of this the most. i keep thinking about when my sister was first diagnosed, she was in the hospital and our other sister called and she told her the CT results and apparently said right away, do you think kim will come home. and of course i did, i had a bag ready to go in case the news was bad. one of the first things she said to me was "i feel like i'm on a roller coaster" and i told her, well buckle up, because you are on one and it will likely keep coming at us. well this week, it's back. my sister finished her chemo and radiation a month ago and we had the CT on monday. we were to meet with rad onc right after and he told us he was looking at the scan and it really looked good. i said right away - what about the adrenal gland? he said - unchanged. the back story is, when first diagnosed, there was a 2 cm nodule on the adrenal. no one would biopsy it, MRI was inconclusive, the PET report said the uptake was not indicative of a met. so we moved forward as 3b. the CT before starting radiation said that the adrenal was 1.8 cm and was a met. i said to each of 3 doctors - if the lung tumor shrunk 55%, would 10% in the adrenal really be likely of a met, and can't that just be a measuring error. all 3 agreed with me, with rad onc being very emphatic. med onc said - well if a CT indicated a met, we would do the PET, and the PET said not indicative of a met, so let's go forward aggressively and keep watching. so i was thrilled to hear it was unchanged. and this dr was so psyched by the great response and said he never would have expected her to do so well and he was anxious for us to go back to the surgeon as he felt she was possibly one of the 3b folks that surgery would be warranted. today we met with med onc and he said, there is something very distressing on your CT report. the adrenal has shrunk again and this seems now to very likely be a met. 2 days of feeling good, then BAM. now i know to expect that, i'm the one who warned her about it. but it still took the wind right out of me. and then as the medical one in the family, i'm very aware that folks are looking to me and following my lead, and i know i've got to portray some optimism. med onc still wants us to talk to the surgeon. he said that it wouldn't be the first time this surgeon took out a lung lobe and an adrenal gland and that given how well my sister is doing that he still wants us to be agressive. he did look at me at one point and say - you will be at that appt, right? he said to my sister, i know this is now more complicated, which is why i am guessing he wanted to be sure i would be there when she meets the surgeon. i'm working from my sister's even though my workload back home is big, but man i am so glad i'm here to be at these appts. my sister seems to be handling it well, and i guess they think i am too. but i just want to go somewhere alone and cry. so instead, i'm sitting in her dining room typing to all of you. she did give us the best laugh of the day, when she called her husband to update him and told him that the dr wants us to go to the surgeon and see if the surgeon will give her a lobotomy. lobectomy, lobotomy, same thing. i told her it was certainly a novel way to treat cancer and bound to get her into the medical journals. she said yeah, i'll still have cancer, but i guess i won't really care. she laughed so hard that at first i wasn't sure if she was actually having a bit of an emotional breakdown. but no, she was just laughing hysterically. sorry for the length, but i needed an outlet right now and i can't leave here to go call any of my friends. so this seemed like the right place to come to vent, if only electronically Quote Link to comment Share on other sites More sharing options...
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