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[cancer] Field notes from Cancerland, government shutdown edition

Halfway Through the Two-Month Box

I have lab work tomorrow, and my monthly appointment with my oncologist on Monday. That marks me halfway through the two-month box. This is the easy one. The doctor is just checking on my continuing experience of the Regorafenib. It’s a very difficult drug. Me, still having trouble standing, walking, eating, sleeping and thinking, plus the usual lower GI disruption. In other words, same as it ever was. I am seeing a downward drift in my weight, which is correlated to a reduction in appetite. We’d like to get to the bottom of that, but it’s nowhere near dangerous yet.

Speaking of GI

I had a pretty violently bad evening yesterday. Wound up having to take both sets of GI pills so I could get some sleep. I was still woken up twice by urgent cramps. Meanwhile, Lisa Costello was feeling unwell. This meant we had to cancel our evening plans with the delightful Ellen Eades, who is visiting. This morning, the general information coming from my GI is that when the pills wear off, I’m right back in the soup.

School Visit

I’m doing a school visit today to discuss my recent essay on kindness and opportunity [ jlake.com | LiveJournal ], which was used in the class as a teaching tool. I’ll write more about this once I’m sure I have permission to reveal details.

Disability, Life and Health Insurance

It’s been a bit of an exciting week with various setbacks. For several days my health insurance was in cancellation status due to the transition from being part of the employer group to being in a COBRA extension. This while my $9,700 monthly prescription for Regorafenib needed to be refilled. My disability insurance is linked to some of my life insurance coverage, and I also received an odd letter about that. All will be well, but it’s pretty stressful to navigate this kind of stuff.

Estate Planning and Finances

Also an exciting month because I’m in the transition between Short Term Disability and Long Term Disability, which means about five weeks with no income at all. Makes paying the bills fun. (Yes, I have plenty of money in savings, this is not a plea for help, just an observation about stress.) The estate planning continues, but every time I think we have ourselves sorted out, something new comes up and it drags on a little further. Eventually I will be done breaking my brain on this.

The One-Hour Rule

Based on several recent experiences, I have now instituted a one-hour rule. I can only spend one hour per day in focused discussions or meetings on complex issues such as finances, insurance, disability, estate planning, etc. It takes about that long for me to check out of the conversation and become increasingly confused. If I push very far past that hour, I spend the rest of the day fatigued, irritable and distressed. This is part of why I am on disability now: I’m simply not capable of the kind of focused, quality cognition that marked my entire career in both the Day Jobbe and as an author. Hates it we does, precious. Hates it we does.

The Tough Stuff

We’re putting a competency evaluation plan into place. Basically, at what point do I turn over my debit card and car keys to someone else, and let the existing powers of attorney come into play? Because almost by definition I likely won’t recognize my own point of incompetence, we’re going to draft an agreement that a group of the people closest to me have to unanimously agree that I need to surrender my decision making powers before this happens. I have also enlisted my therapist in this process. The point of the written agreement is that the me of today can hopefully convince a potentially querulous and in denial future me of what needs to be done.

Likewise, we are in discussions of how and where to place a permanent memorial to me. As I’m planning to donate my cadaver to the medical school at the hospital where I receive treatment, there won’t be a gravesite. No conclusions yet, but I can tell you, it’s a jolly topic of discussion.

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