Hi, it's Sissy. Sara got some full color scans this week and they looked great so far, she is in the machine now for her last scan. Nothing was glowing and all her organs looked so pretty in color- you would be amazed at the detail of the scans-I wish we could have a copy so we could look more closely.
In the good news/bad news category she has to get more chemo. We had been talking last week about her scans and I was nervous that she would be going for over 4 weeks without any treatment. She told me to shut up, that was scaring her but then called Heidi to remind Dr. Lin of this and that the scan was taking longer to schedule. That was when he wanted to schedule a chemo dose so Sara begged Uof W to squeeze her in for a scan-please, please, please! Alas, it appeared that put a bug in Dr. Lin's brain and he decided she was getting more chemo anyway since most patients get 4 whole treatments not 1 and 1/3 like Sara did.
It is good news because she is so responsive to this chemo and it definitely makes me more comfortable to know we will be hitting any little bastard tumors that are not detected by even the fancy scan (the scan only detects a clump of at least 1 million cells). Sara is pretty upset because she feels so great and was planning on going back to work next week but now is in for at least 3 weeks straight of being sick. She was hoping to work Christmas Eve so other people wouldn't have to since she was getting surgery last year at Christmas. Also, she is getting anticipatory nausea as soon as she heard the news and can taste the yucky chemo taste in her mouth and feels the weighted blanket feeling (like the lead blanket at the dentist, she says). She knows in her mind it's good but her body is trying to run away from what's coming!
Dr. Lin is still pondering her treatment for after chemo. He is not sure which card to play for this round and he has to make this all up as he goes along. This experience has definitely shown there is more to treatment (of a rare wierdo cancer anyway) than following a flow chart! We've learned that the timing and sequence of treatment is important because you don't want to play a card too soon instead of saving it for a better opportunity.
I can't stress enough to anyone within the sound of this blog - second opinion at a big teaching hospital!!!!!! It isn't the doctors fault at a smaller hospital, they just coudn't possibly know all this new info from the past 5 years. The nurse at the last infusion said they get patients all the time who were told to get their affairs in order by a rural or small hospital, then come to SCCA for a second opinion and get treated. Sara's first doctor was taking this approach -that chemo was useless -it's over. Even at the last appointment, as my sister referenced last post, Dr Lin told us the doctor at the UW in March/2011 wanted to send Sara to hospice. Anyone who saw her liver got "the look" on their face but Dr Lin said no she would get to try chemo. I can barely think about it now because it makes me a little lightheaded. We were so lucky our path somehow led us to Dr. Lin!
A little Part II when I get to the infusion bay later!
