We were blessed with safe travels todays and thankful for that. Despite best efforts, we did not have the scans we needed so Dr McDonald still hasn't seen the key spine MRI. They were supposed to have been sent from Mayo's directly here. Those are supposedly to get here tomorrow now. To be safe, we picked up duplicate copies last week at Mayo's and unfortunately trusted they had put on CD what we asked for. Turns out they did not have the key spine MRI on the disks we brought. (3 copies is no better than 1 when they copy the wrong stuff). So in the end the treatment plans are progressing based on the notes he read and the brain and lower lumber MRI he has and he should have all scans he needs tomorrow.
In meeting with Dr McDonald, it just all comes back to us the seriousness of the situation from a medical standpoint. You can tell a different look in his eyes than when we were here last summer. He doesn't really expect the radiation he plans to give to cure the cancer. He does feel it will slow it down and give me more time, but he makes no promises. So from that standpoint it was a hard day. But yet I told Leann afterwards, we are not going to change our attitude towards God and life because of this. We are going to make the best of each day going forward. We still know that God is in control. We are still submitted to His will. Many are still praying for a miracle, and there is nothing today that says there is any less chance of that than there was two weeks ago. But yet it's good to be reminded periodically of the seriousness. It was great to have the time driving together today, and we went out for supper to a Mexican place and I just really savored the time with her.
The treatment plan is to give 36 gray of radiation (70 gray last summer to the original tumor site) to the whole brain. At this point he feels that without treating the entire area in my body containing spinal fluid that it will most surely return. This means there will be longer term (months out) effects to my cognitive ability, memory, etc. that usually affect most people and are noticeable. Proton therapy is no better than photon in this regard. The same dose would be given down my entire spine as well. Then in the hottest areas of the tumor in my spine and lower brain he would go up to about 50 gray. Proton therapy will spare some of the side effects to internal organs in the area of my spine. The total time for this is about 5-6 weeks. He is looking at starting sometime between next Monday-Wednesday depending upon when the machine shop can get all the equipment cut. I was able to get the fixturing table frame and mask made today and they took the planning CT scan with me laying in that setup. Each treatment this time will be more like 1.5 hours, maybe getting down to 1 hour on a good day. Last summer they were more like 1/2 hour long.
Dr McDonald is definitely willing to discuss plans and look at what we find from the CA lab and the Boston meeting we have on Thursday. Here at IU they really don't have much experience in the meningioma side of things outside of radiation. He's open to combining radiation and chemo at the same time as he knows with some tumors the combination can be more effective.
My simple prayer is that I can just keep the right perspective that God would have me to. Not too down, not too upbeat, just doing the right things with my time each day. We love you all so much and thank you for your prayers for us.
Derek & Leann