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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.

[events] My Friday at Paradise Lost

The best way to characterize my day yesterday at Paradise Lost here in San Antonio is to reproduce my Twitter stream:

#wip Innocent of clothing, the angel’s manhood was frighteningly large even though it was not at all turgid.

Remember!
Remember the Alamo

Said at Paradise Lost: “It’s not the Nebula for Best Tumor.” #nocontextforyou

“Hot, wet fat men. The two of us were floating around in the hot tub like a couple of potatoes in the toilet.”

“That’s not a point. You’d better eat it.” #nocontextforyou

Important Safety Tip: Never walk into public men’s restroom bare footed. Just sayin’, no particular reason.


Photo © 2013, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[culture] The found poetry of spam

From last week’s email:

Russian Emperor Alexander I, kept the water in army in buckets silver buckets,
so that his soldiers do not suffer from river or lake water.
After a little while, a nurse came in and asked Linda what she wanted.
Digestion is when a mineral with a stronger charge breaks up the current bond of the other mineral.

[cancer] Things I want to do before I die

Things I want to do before I die, time, health and funds permitting:

  • Take a long road trip through the American west with [info]the_child
  • Take [info]the_child to New Zealand to visit [info]danjite and [info]khaybee.
  • Take [info]the_child to Antarctica.
  • Visit the railroad graveyard in Uyuni, Bolivia with a really good camera in hand.
  • Visit the city of Petra in Jordan.
  • Go back to Taiwan (where I was born and spent my grade school years) one more time.
  • Write (well, finish) Original Destiny, Manifest Sin.
  • Write (well, finish) Jay Lake’s Book of the Dead.
  • See [info]the_child graduate from high school.

With the exception of writing one or both books, none of these are likely to happen for a bunch of very good reasons, money and time especially, but they’re what’s on my mind. Funny how they’re almost all travel-oriented.

[cancer] Surgery outcomes, the simple (and lucid) version

This is a slightly more lucid (I hope) recap of my last blog post, with a few more thoughts added.

Surgery went well from a procedural perspective. There have been no complications, post-operative healing has gone well, the incision is looking good without inflammation, bleeding and drainage. As my surgical oncologist has said, I tolerate surgery well.

The bad surprise was the discovery of unexpected tumors outside the liver. My surgical oncologist’s initial comment to me on that was, “What we’re supposed to do when we open you up and find unexpected tumors is just close you back up. I knew that wasn’t the right answer for you.”

I still have not seen either the surgical report or the pathology report, so this is not full and final data, but my current understanding is that there were four small tumors in my lesser omentum and one in my thoracic diaphragm, which was more or less interpenetrated with my liver via a bridge of adhered scar tissue.

All tumors were resected or ablated, and I am currently in No Evidence of Disease status. This is not a remission or cure, this just means there are no detectable tumors at this time. Considering the fact that the omentum tumors were not detected prior to surgery, this is not exactly confidence inspiring.

I’ll be making a longer, more complex blog post about what this all means for my health, my likely paths forward, and what happens next. Essentially, things have gotten more urgent and dire than they were looking pre-operatively with the Ashcroft tumor question. Also, the overage on the fundraiser is going straight to the additional testing and consultations which are being sparked by these new findings.

So, yeah, not so good. The good news is they got everything they found. The bad news is there were tumors to be found outside my liver. I have now experienced metastases in four locations outside my original colon presentation. I have now experienced multiple metastases in various sites. I have now experienced metastases that apparently presented while I was under chemotherapy. Like I said, not so good.

I won’t be seeing my medical oncologist until probably next week, as they are awaiting the surgical report and the pathology reports, as well as the meeting of the Tumor Board, which happens on Thursdays. Plus we’re waiting for the tumor gene sequencing results, which even on a rush basis will be another two weeks or so.

More to come, once I have a bit more mental clarity to discuss. Meanwhile, I am expecting to be discharged from the hospital today. Pain is controlled and my body is functioning reasonably well.

[conventions] Worldcon, day zero

So far, so good. Yesterday’s travel was punctuated by various grades of frustration, though ultimately successful. My flight from PDX to LAX was 25 minutes late into the gate, which made my connection from Terminal 6 to Terminal 4 remarkably problematic, especially as I missed the transfer bus by one minute. Luckily for me, my flight from LAX to ORD was late in boarding. On the plus side, one of my fellow passengers clocked me upside the head with his rollerbag, as my skull was apparently getting between him and the overhead bin space he desired access to. Silly skull.

I did get almost two hours of revisions in on Other Me in flight, which was nice, and read more Mark Teppo. On arrival at ORD, I ran into Rochelle U. and Ken B. in the luggage claim, so we shared a cab to the hotel, which spared me dealing with the train.

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We were quite amused to note the vomit clean-up fee on the rate card.

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At the hotel, I ran into the usual forest of friends and acquaintances before final finding my room and my roomie, Sally McLennan. She and I eventually toddled off to Three Aces for a truly fantastic meal. Highly recommended!

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This morning I went for a walk along the riverfront, then the lakeshore. Some odd sites, including a Chicago police car graveyard and some curious public art.

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Not to mention me discovering that it’s a bad idea for me to forget to pack my hairbrush.

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Wound up breakfasting with Scott Edelman and Bob Silverberg, which was pleasant and funny. Now sorting out my day, which will be low key. After today I’m stuck on fast forward, so I’ll be enjoying the relatively mellow proceedings for now.

See some, all or none of you around the joint here.


Photos © 2012, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.