Sheree & Don,
I just came across this thread and had to read all of it, I could not stop reading it and it gave me a new perspective/aprreciation on/of my wife's experience, she is a professor at the medical school at UPenn where I had my surgery she had nowhere near the commute, she walked over during lunch to bring me a chicken sandwich for lunch everyday of my week in hspital and two weeks in in-patient rehab, she had a fifteen minute drive home every night, boy were we lucky. I am almost 8 weeks post op and can tell you that we all struggled with that first BM so I was heartened that your wife's steadfast concerns extended into that realm, my wife was very much interested in every aspect of my care. Now as far as that radiation thing, my wife works in leukemia research and the docs she works with told me that the sort of radiation that they use for CK and FSR should (!) be very safe, however there are concerns with people lacking certain tumor suppressing genes (like but not exactly like the one that is feared to cause schwannomas (AN's) could, (no data exists either way) cause problems down the road. I emphasize that I had the surgery because my tumor was pressing on my brain stem and possibly affecting my ability to breathe and swallow so we went for it but also seriously considered radiation for non-invasive reasons. Btw, my ENT was all factual and cold hard fact and my neurosurgeon had a great compassion and wit and bed side manner (not very matter of fact about my symptoms). Please ! talk to your surgeon at this point as to whether or not you could wait and see and follow your remaining tumor by mri, it they cut off nutrition flow to it, it is possible that it will die some on it's own (necrosis, assuming no angiogenesis, (growth of blood vessels by tumor to feed itself) and Don and can recover some before further treatment. It may reveal just how much (side affects)is being caused by surgery aftermath and how much is being caused by remaining tumor. I was relieved that they got all of my AN in one shot, and I realize that having some tumor around may seem like a cloud over your heads but the number one thing is what is best for the long haul for your family. I only suggest that you ask these things but I am not a Physician, but my physician mentioned the possibility of leaving some tumor for wait and see for me, becuase of the physical location of the tumor, I am aactually a scientist like my wife. Sheree, your devotion to Don and to this board are inspirational and these are good folks here, I was rooting for him while reading this, realizing at times that I was in in-patient rehab when he went in for surgery on the 7th. Being home will be so good for you both, Don, enjoy each little milestone and share them here, many of us felt the same jubilation at our first time up the stairs or our first un-assisted shower. Hang in there, you have been through much and from the sounds of things, have so much to persevere for. Reach out here for kind words of encouragement or understanding, we will be here for you, heck you can call me if you want. I have to go to sleep if I am going to work tomorrow. It is 3am. God Bless,
Steve
