Thanks everyone for all your prayers. This is my first post since surgery. I can type from bed with the right pillows to help. In general I feel pretty good. I was able to make half a lap around the neuro floor today with a walker. All the drains are disconnected now which is a good sign. I've been sitting up in the chair for most meals but it's hard on my neck to sit up for too long. In general the pain is going ok but at supper it got bad since I had reduced meds a bit too much too quickly.
My brothers came up this morning to see me which was really nice and then they took Mom back home with them tonight. Leann's parents arrived later this afternoon so it's been a busy day catching up with everyone. It's good to have people to talk with though so I don't get too bored.
We were able to meet with the neuro-oncologist Dr Hammack this evening. It helped clear up some decisions but seems like we always hear new things too. I asked her how often they see grade 3 meningiomas here at mayo's and she said about 3 per year. So this tumor is really rare and they just don't have experience with them.
As far as the course between radiation and chemo, she feels there is more hope in radiation, as there are no drugs FDA approved for meningioma tumors. The drugs she had mentioned have been used before but were developed for other sorts of tumors. When we talked to the radiation doctor at IU last night, it sounded like he was putting more hope in chemo than radiation, because around the spine they cannot give as high a dose of radiation. So it's a little discouraging to learn how unsure everyone is about how to treat this.
The radiation oncologist at Mayo's thinks we will be better to go back to Indiana for radiation treatment since they will have experience with the treatment fields and be able to prevent overlap. This makes one decision a lot easier at least.
We just had a group of Mennonite singers stop by singing a couple songs. "some glad morning, when this life is over, I'll fly away". None of us know how far away that morning is but it just made me sob to hear the beautiful words and think of heaven.
Back to the treatment plan. So mayo recommendation is get radiation as soon as possible at IU and then do scans and follow up with mayo 6 weeks after radiation to see if it's working. They wouldn't recommend doing the chemo until we really see what the radiation does. We did get some tumor sample to a lab in California that is testing different chemo drugs on the tumor cells so we'll know which drugs if any have promise of working once we get to that point.
So tomorrow looks like phone calls to IU and praying for continued recovery. We continue to put our trust in God rather than man. We feel so unworthy of all the prayers we feel.
Derek & Leann