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Jay Lake
Date: 2013-06-17 05:30
Subject: [cancer] Field notes from Cancerland, post Father's Day edition
Security: Public
Tags:cancer, events, health, jaycon, personal, radiantlisa, work
In General

All the excitement of JayCon XIII is behind me, along with JayFest and the various auxiliary festivities. This means that I am back to focusing on the difficult details of my life. Including still not having my laptop, and thus missing access to many of my files. I believe the new one arrives tomorrow. It also means the mental and emotional landscape has shifted from a multitude of entertaining distractions to being back at the center of Cancerland. Melancholy prevails.


This week I see a trust attorney for some more estate management discussions, and a palliative care doctor to talk about end-of-life planning in detail. I'm also sitting for a print interview, as well as film shoot not connected to Waterloo Productions' ongoing Lakeside project. More about these as they unfold.

Life Transitions of the Financial Sort

The house refinance finalized and funded last week. I hadn't really written about that here while it was ongoing, simply so as not to create problems in the process should the lender Google me for diligence. I'll say more about this later in a detailed post on end-of-life finances, but the general idea was to reduce the interest rate in order to minimize cash flow going forward.

Likewise, I have begun the process of separation at work, and my last day on regular payroll is currently set to be 7/1. I'll go on Short Term Disability for a while, then transition to Long Term Disability later in the year. I have a lot to say about this process, but would prefer to see it all play out before I comment publicly. What is clear is that I will go through a period this summer of essentially zero income, which will be scary and tight.

Emotional Ripples

Lisa Costello had a near meltdown a few days ago in which she told me how difficult it was to watch me dismantle my life piece by piece. Which is exactly I am doing. Leaving work, simplifying and shutting down financial accounts, giving away or getting rid of much of the contents of my house, saying good-bye to geographically distant friends as I get the chance to see them, and so forth. I pointed out that dismantling my life on my own terms was itself something of a gift, as it grants the illusion of control and allowed me to arrange things as I see best. Those brave words aside, she's absolutely right. This process is heart-breaking. My only comfort is that it's even more heart-breaking when your survivors have to do it all unexpectedly.

Regorafenib Side Effects

Side effects bingo continues. As of today I am in my off week for the drug (21 days on, 7 days off), so the side effects have hopefully peaked for now. Some of the advice we've given is that month one is the period of maximal side effects, some advice says month two. In either case, we expect a plateau after the peak, with the possibility of some mild amelioration. In the mean time, yech. My mouth continues swollen and sore. After most meals I brush my teeth with pharmaceutical grade toothpaste, then rinse and gargle with a saltwater solution followed by a baking soda solution. (I tried combining those two at first. Pro tip: Don't. Just don't. Trust me on this one thing.) After that I rinse with the lidocaine mouthwash. Let me tell you, go through that a few times and you never want to eat again.

The other overwhelming side effect is the hand-foot syndrome. As of yesterday I was finally seeing some skin breakage, just peeling on my fingers mostly. But the pain in my palms and soles has been quite troublesome. I walk with a cane now, use a disabled parking permit, and spend as little time as possible on my feet. I also wear cotton gloves most of the time, to avoid incidental friction on my hands. Yesterday my feet hurt so badly I thought the skin of my heels had torn free (which is a possible thing on this medication). In related news, the swelling in my scrotum continues, though we've managed to mitigate it by having me wear briefs which are slightly too small for me. This gathers and cradles the affected area, which keeps the skin of my thighs from irritating the swelling. Crazy stuff.

I'm also continuing to experience erratic GI function. Admittedly, that's my ground state these days, but the Regorafenib creates mild constipation on top of everything else. This is pretty much the opposite of what it says on the tin. And my sleep patterns are just weird at the moment. Unless I have a strong amount of social distraction, I will all but pass out by 9 pm. I will then wake up between 2 and 3 am, and usually cannot go back to sleep. Even my friend Lorazepam doesn't seem to fix this problem. Just lately, I've been falling asleep in the afternoons, and fairly deeply at that. What I'm not yet doing is hitting that pathological fatigue that has characterized so much of the rest of my chemotherapy experience over the years.

I see my oncologist next Monday, along with more bloodwork to track my liver functions and overall body chemistry. We'll have to find out what the second month of Regorafenib brings. I suspect this will depend a lot on how much the side effects diminish this week in the absence of continued further drug dosage.
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Nat S Ford
User: natf
Date: 2013-06-17 13:08 (UTC)
Subject: (no subject)

Also, fuck cancer.
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Agent Mimi
User: agent_mimi
Date: 2013-06-17 14:31 (UTC)
Subject: (no subject)
That's too bad the saltwater and baking soda mixtures don't work well together for rinsing. Salt plus baking soda in warm water for nasal lavage works well, so I would have also tried mixing them first based on that alone.

Fuck cancer.

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User: threeoutside
Date: 2013-06-17 15:23 (UTC)
Subject: (no subject)
I hope Lisa knows that she, too, has lots of company in this hard, hard time. She's in the front line but as you already know, you've got a whole community out here...

One thing occurred to me as I was reading about your preparations: At some point in the future, I imagine your daughter is going to be stunned to find out that not all people in your situation are this forward-thinking in looking out for your loved ones. MOST people would not be going through the estate planning, etc., you're doing. At that point, she's going to have some mighty warm feelings for her dad.

I guess this occurred to me partially because when I went in to the financial planner to set up my retirement, knowing ZERO (ziltch, nada, bupkus) about that whole field, I had used index cards (you may laugh; I am) with each source of income, and each expense, and each hope and dream and its cost on its own card. I felt like an idiot, it was kindergarten-level stuff, but at the end of our session the planner told me I was more prepared than 99% of the people who walk into his office with their retirement lump-sum check in hand and ask him what to do with it. I was gobsmacked. They didn't know when they were going to retire??? They didn't know they needed to plan? What?

So, good on you for doing all this work for your loved ones.
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User: joycemocha
Date: 2013-06-17 16:11 (UTC)
Subject: (no subject)
I will say this to you and Lisa over and over if needs be--this time you are taking to settle your affairs is a gift to those who survive you. Your estate's personal representative will be extremely grateful. This is a level of preparation that most people absolutely do not do, and the post-demise results can be horrific if you don't do it, especially if you have any complications to your estate.

I took probate and estate planning courses thirty years ago as part of my Legal Assistant certification, and they came in very useful when our parents died. My parents' estate was a mess (in part because of family issue); my in-laws just big due to the dairy farm property but helped by having an accountant brother-in-law serve as the PR. Despite all of this experience we were totally blown apart by the complexities it has taken to help our friend after his wife died suddenly last summer. It took nearly a year of forensic bookkeeping to put everything to rights, and that was just dealing with two mildly complex and low income small businesses (his and hers). People underestimate how difficult it can be to trace back financials when the person who has died is the one who was keeping the books--and their recordkeeping had diminished to the bare minimum as a result of the condition that killed them. Memory is a fallible thing.

It doesn't lessen the heartbreak of having to do it yourself.
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User: radiantlisa
Date: 2013-06-17 17:33 (UTC)
Subject: (no subject)
It absolutely is a gift. I shudder to think what would have happened if Jay hadn't taken this on while he was still competent to deal with it, and I'm grateful every day for his foresight and diligence.

Doesn't make it any easier to watch.
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Teal: blue light rose
User: teal_cuttlefish
Date: 2013-06-18 18:36 (UTC)
Subject: (no subject)
Keyword:blue light rose
Lisa, do you have someone to listen as you vent? This is an agonizing process to go through, and it would be a good idea for you to have a friend or professional to unload on. It will help you be a more effective partner, as well as tending to your emotional well-being. If possible, please find someone.
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User: radiantlisa
Date: 2013-06-18 18:41 (UTC)
Subject: (no subject)
Oh yes, I have an amazing support network, including my therapist and many, many friends who take wonderful care of me. I'm very well covered on that score. Thanks for caring.
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January 2014
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