We are glad to finally be on the way home. We generally had a good day. the doctors can't explain everything, but are not surprised by my tumor anymore. The MRIs show stability and no tumor growth in the spine. In the head, there is nothing distinct but the area around the brain stem is slightly larger. This is the area they aren't really sure what is going on. The PET scan showed no additional tumors other than the little nodules in the lungs. We were also seen by a doctor Buckner who deals more with brain tumors that have spread to organs like the lungs. I had an ENT evaluation which didn't really reveal any solutions but at least we have more explanation. My right vocal cord is paralyzed which explains some of my voice changes. The soft palette is also paralyzed on the right side which contributes to the speaking difficulty. The only answer they have is microscopic or invisible disease that has caused my symptoms to worsen but the scans to look relatively good.
As has been the case all along, there is no well defined protocol to follow. Dr Buckner has had some success with an oral chemo that I would probably start on. The main side effect of this is fatigue. It's a daily pill versus the IV injection. He's going to wait to decide exactly what we do for another week or two till we have the results of genetic testing on the tumors they removed from my lungs. There is always a chance the results will point him to a specific drug. In the meantime he will get started on the insurance for the more common drug.
Next week we are planning to come back for some discussion surrounding a feeding tube and some preliminary scans and blood work for the chemo. They also want to fit me for some ankle braces to help my walking stability.
The main thing now is just the difficulty eating. My appetite is getting a tad better each day. But I still don't look forward to meal time since its so much work. My spirits are generally good, but I cry every time I think of the kids. I miss them so much. We finally said we were coming home today no matter what and we'd go back up again for more.
Thanks for all your prayers and cards over the last couple weeks. Mom brought a bunch of our mail up and I just cried as I opened it.
Derek & Leann