posted by Mary Lello, Friday, January 16, 2009, 6:44 AM
Big day in Boston. Long day in Boston. But Dana Farber is amazing and all the people we met there were very kind and gentle. Our doctor, Dr. Wen wants to try and get Jim into a clinical test. There are several tests available right now but due to the fact that we live in Maine and logistics would make it hard to be at DF on a daily basis this seemed to narrow some of the tests down. Dr. Wen said he will know on Monday if a particular test he wants Jim to do before and during radiation will be open to Jim.
If we can get in, and I still need to read the literature but certainly we are leaning this way, then we will have to put off radiation for a week. We will have to get another MRI and we will have to go back down to DF next week for Jim to undergo their testings to make sure he fits the trial. Then he will take a drug while undergoing radiation 5 days/week here in Portland as well as taking the chemo-pill.
It's all very overwhelming right now. But it's also very positive and we feel lucky we are only 2 hours from DF at this point! If all works out we will be going down to DF one day per week for 10 weeks. How committed are you folks who have offered to do some driving? Perhaps if enough of us are willing to take one week each month to drive Jim down the burden wouldn't feel so big - and might even become an event to look forward to? Spending a day in Boston with Jim?
I put the cart before the horse. But there is now some scrambling to do to get the MRI, cancel radiation for next week (but keep it for the following week?) and get ourselves back down to Boston again next week. What a new world it is.
We also met with Bob Morrison, a good friend of Jim's. Bob was wonderful and shared with us his own story of beating the odds with cancer (not the same kind of cancer as Jim but still...) and the naturopath doctor he went to see, and continues to see, who seems to have specialized in working with cancer patients and recommending supplements and diet that will enhance any drugs being taken and fight the cancer cells from the wholistic front as well. This man is in Lexington so we may have to try and get down there as well in the very near future (next week also?)
I think it's sinking in that this is the world we now live in. That this is what we will confront everyday for the rest of our lives. And that the goal is to have a quality life and to keep pushing the odds a bit further, day by day, week by week, month by month.
Others have done it and are still doing it now. So this is uplifting and helps re-energize us to face all that we must in the next few weeks to just get on top of this cancer.
Loving you all back!