so joan says the dr in boston does not think she will benefit more from proton therapy. so looks like she'll do radiation soon in chicago. she is taking off work next week for another scan and meeting with oncologist. she is insisting I don't need to work from chicago to be there the 6 weeks she goes through radiation. I just want to be near in case she does need someone emotionally or otherwise. can anyone tell me what to expect? am I silly to think she'll need someone?
My mom always came to help when I had treatment and at time it was difficult for me to have her around because it made me feel like I was losing my independence and I was becoming a child again. So we did have plenty of fights which were hard on her because she was really trying her best. Looking back, I feel very bad about my bad attitude towards her. I am convinced it would have been much harder without her. I think you should go but expect some resistance and lack of appreciation. Just ignore the bad attitude for 6 weeks... By the way, there is the CTOS meeting next week in Chicago. They will be talking about sarcoma a lot. Here is the program:
http://www.ctos.org/meeting/2011/program.pdfThanks Ed, I know that’s how she feels too. She went from living at home to roomates for years in boston. Then met someone and moved in with him for 5 years. When she moved to chicago she finally got her own place and with no thyroid she relishes her ‘me time’ to take naps whenever her body needs it. I know i am walking a fine line. She mentioned last weekend she thinks she’ll be ok first few weeks but then she might have to take off work. I just dont want to be 5 hours away if she needs something.
No, you're not silly thinking that. Trust me she'll need someone.
I talked to her last night and today. She went in for her CT scan yesterday and the radiologist wanted to do it with contrast but dr said no because she does not have thyroid. So reordered as MRI with contrast. But now need another authorization from HMO and then it will take another week to schedule, so wasted two days off work. She did talk to dr about trying to get proton therapy in boston. They told her they could send her for that in chicago. So she needs authorization for that too. She thinks maybe another two weeks or so before things start happening. She had the frustrated dealing with healthcare personel and paperwork blues.
Is she treated at a sarcoma center in Chicago? The situation sounds messy and the frustration is understandable 
Fortunately she already had the surgery and hopefully it does not make a big difference whether the radiation starts now or in a few weeks. I hope her journey becomes easier…
She was treated @ university of Il Chicago med center. I dont know where she would go for proton therapy. But sounds like outside of u of I group. I think a lot of the frustration is with hmo and ‘paperwork’ or referrals in the computer. Does anyone have experience with proton therapy?
At least one of the members, Nikolas Ritschel did proton radiation. You may want to ask him on his page about it, in case he does not read this discussion… About insurance, if your daughter has trouble getting something approved, contact Mimi Olsson (also a member here). She has plenty of information about how to deal with insurances…