The Story of a Caregiver

I started writing this blog assuming people that read it would know me and the situation. At some point I decided it might be best if certain people didn’t read it. I don’t want anyone involved to take from what I wrote that I’m unhappy in my situation. It occurred to me later that quoting “Lonely in Your Nightmare” might give the wrong impression. My situation is not a nightmare. It’s sad sometimes, and frustrating, but it’s also sweet and funny and fulfilling. I think every caregiver could understand.

Anyway, as I said, back to the beginning.

Maybe not the beginning of everything, because that’s a bit complicated. Let’s start with Mike and I have lived together as roommates with benefits for 15 years. I know, that’s longer than many marriages. As I said, it’s complicated. So this time last year we were living in a 3- level townhouse. My bedroom was on the top floor and his was on the bottom. One day he told me he woke up in the middle of the night having a seizure. I don’t remember if he said the word, but that’s what it was. I told him to see a Dr, but he didn’t have time to take off work. A couple of weeks later, the same thing happened and he woke up on the floor covered in blood and with terrible pains in his foot and shoulder. Turns out he bit his lip and crashed into some furniture, breaking his toe and getting a small fracture in his shoulder. Again, I told him to see a Dr. He said he’d think about it. Another couple of weeks and it happened a third time. This time he said he’d go to urgent care after work. He told the urgent care staff what had been happening and they told him he needed to take an ambulance to the emergency room. He didn’t want to leave his car behind (?), so he drove to the ER after signing a paper saying he was doing it against medical advice. They took some scans and discovered a mass in his brain, not small. The following day, they did a biopsy to discover it was a glioblastoma (GBM) and due to the location, it was inoperable. In case you don’t know what GBM is, it’s very bad. His original oncologist gave him 6-12 months. He was a generally negative person, so we eventually switched to a neuro oncologist who was more treatment focused rather than straight to hospice. The radiation oncologist was also slightly more positive and gave him 12-24 months. One problem was that the type of GBM he had was generally unresponsive to chemo. But Mike actually knows someone with it who’s made it 5 years so far, so we tried to hope.

Well, it’s getting late, so I should probably close for this evening and pick back up tomorrow. If you’ve read this much, thanks.