Encephalitis from cancer or meds?

beckyde

I've just joined here. My husband has non-small cell lung cancer, diagnosed a year ago last month and staged at IV even though it's not metastasized. The targeted med he was on and/or the cancer itself have caused him a very rare auto-immune encephalitis called Bickerstaff brain stem encephalitis. They beat it last month with an antibody infusion and he was home and normal for a week and a half, but it started again last Wednesday. It's different this time.

Has anybody here experienced this before with a loved one? It's really lonely to have a situation this rare. I thought I'd ask here since this is probably the largest network.

I don't know what's going to happen, and I'm so tired of making life and death decisions. I was caregiver for my nonagenarian mother who died in October, and that was terribly stressful. Husband was DXed two months before she died. So I jumped out of a frying pan and into a fire.

I would love to know how people deal with this and if anybody has had similar experience. I meditate, go to therapy once a week and have a great amount of love and support from friends and family, and I intend to find a local support group, but right now I'm lonely in this journey, even though I'm not necessarily alone.

It's so freaking hard. With luck, he and I may celebrate our 43rd anniversary in November.