Thursday, November 15, 2012


That title about says it all, right? All the hoping and wishing I could do or others did unfortunately did not help us. I've meant to copy some of my facebook status and convos here to have a record of how I was feeling all of these 12 excruciating days. John has a "Malignant Peripheral Nerve Sheath Tumor". Part of it is still in him. The neurosurgeons were able to remove the tumor in his spinal canal. We waited days for this report and then HOURS for the neurosurgeon to show up when I knew and had been promised a report by end of day. He showed up at 9 PM with a less than sympathetic description of what was going on. On the bright side, he is beginning to regain use of his body. Its amazing that he was normal less than 2 weeks ago and now cant do anything without help- sitting up in a chair, walking, etc. He can eat on his own- but not at first, I had to feed him for days while he laid flat- and brush his teeth, etc. But he cant shower, get out of bed...its scary, despite the progress he has made which has been VERY substatial. We finally were moved home today- John is in an inpatient rehab facility for PT/OT therapy daily, for an undertermined amount of time- and I'm so relieved that its hard to really describe the absolute crushing devastation of the diagnosis. The cancer is really really rare. The prognosis is not great. But we're still waiting to hear a LOT of things from a couple of hospitals regarding possible treatment so the best place for him is in rehab and the best thing if for him to get better enough to move around on his own so he can begin cancer treatment. I'll have to post more about how bad it was when I have more time. I try to stay positive for him but at least once a day I have a little breakdown on my own, away from John. Its catharthis, I guess.

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