The Story of a Caregiver

I just read my last post, and I should clarify. It seemed a little sad. I’m usually not sad. I try to enjoy every day, as best I can. Even on days when bad things happen, I try to find something good to focus on. We’ve been watching the Olympics this week, and it’s one time I know we’re in the same place. Often times, his mind wanders or he fixated on something and isn’t present. But when we’re watching the ice skaters or the luge, we’re both right there. That’s a good feeling.

The Venerable Monks (and Aloka) that are walking the Walk for Peace are in the area, and I decided to try to volunteer to help. I was worried about who would care for Mike outside of the caregiver’s normal hours when I got a text from Mike’s youngest sibling asking if it would be OK to come over Wednesday. The only potential roadblock now is that I have to get approval from my boss to miss half a day of work. Considering I missed the day today with a migraine, that’s a big ask. All I can do is hope she’ll understand how important this is to me. I’ve learned so much from the monks. I feel drawn to them. And Aloka. For the few of you reading this, please send me love and light.

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So, it occurred to me I didn’t finish Mike’s story. It’s late, and I need to get up early, so I’ll give an overview. Scratch that, let me sum up.

Mike went through radiation and chemo, then started something called Optune where he wears four arrays (basically stickers with metal disks that you wear on your head). They transmit signals to the tumor and theoretically keep the tumor from growing. You wear it 24/7, and a large part of the time there are errors that cause the pack to beep, incessantly. It’s annoying for me, and I don’t have to wear the thing.

He had several seizures, despite being on two anti- seizure meds, so they added another. Like the first two, it causes fatigue and confusion. That’s getting worse all the time, and we can’t tell if it’s the meds, the tumor, or mood changes due to the situation he’s in.

Around July 4th, Mike started losing strength in his left side (his tumor is in the right temporal lobe). It happened fast and ended up with him in a wheelchair in the period of a week.  His Dr requested an MRI where we saw a lot of white. The Dr said without a Pet scan, we couldn’t know if it was progression, pseudo progression, or edema. We were lucky, and it turned out to be edema. He added steroids and within days he was walking with a walker. Still is. Doctors don’t like to keep their patients on steroids, so our Dr started to reduce them. Once we got down to about 4mg/ day, I started noticing changes. The confusion was getting terrible, and he was having trouble with his left side again. At that point, they added Avastin therapy, a bi-weekly infusion. It did wonders, but we missed a treatment due to bad labs. That may not be related, but during the next MRI, there was definite growth. Fortunately, in his confusion, he didn’t remember that part, and believes there had been no change.

Which brings us to today. He’s confused most of the time and sometimes gets mad at me. He’s eating like a horde of teenage boys (gained about 55 pounds in the past year) and gets frustrated if there are no snacks.

Oh, we have a wonderful caregiver who comes on Tuesdays and Wednesdays while I’m in the office. I wish we could have her here even when I work from home, but it’s expensive and she has another job.

Now, I really have to get some sleep. I don’t know how this blog stuff works, but if it’s possible, feel free to leave comments or questions. I’d like to hope I can be a resource to someone else going through this.