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[cancer] Field notes from Cancerland, Maryland edition redux


My oncologist has advised me to discontinue my Regorafenib, at least for now. She’s hoping to get me into a Phase 1 trial at my treating hospital in the near future. Plus my science advisory board is seeking other options. In any possible case, I need to be at least four weeks clear of my last cancer medication, what’s called a “washout” period. I may restart it soon if the trials process looks to be taking longer than hoped. So maybe I’ll see some temporary improvement in my side effects at least. Another step closer to end, though, given that this drug is what’s been keeping me alive.

Phase 1 Trails

As mentioned above, there is a Phase 1 trial for which I may qualify going on at my treating hospital. There’s an order in for a genetic test on my tumor tissue to see if I have either of the mutations indicated for eligibility. Thankfully we have tissue stored in the pathology department’s freezers, so this does not require a biopsy. Depending on what my science advisory board comes up with, there may be other tests in my near future.

Happy Side Effects Time

This is my off week with Regorafenib anyway, so I’ve been looping back through the usual array of GI twists and turns. Plus we’re trying to taper me off my sleep drugs as I taper off the Regorafenib. I’ve been a little more focused this week than usual, which is nice.

Burning Spoons

Unfortunately, I’ve needed that additional focus. We had a disastrous day with CarMax yesterday, trying to sell Lisa Costello‘s father’s car. We have a meeting this morning with a CarMax manager which may resolve the problem, but meantime we burned about five hours of both her and my time and attention yesterday on what should have been a reasonably simple process. And we have to burn more time and attention today. (Once I have final resolution, however it turns out, I’ll explain what happened.)

Heading Home

We’re flying back to Portland Sunday. Given my health, I suspect this will be the last non-medical long distance trip I make in my life, though I may try to squeeze in one more trip to Omaha to visit friends there. It will be good to be home, but every step I take just lately is more freighted than ever.

[cancer] Talking about life

Further on the question of the nature of my life and my process of death, Ron says:

I considered the posts that I read and saw nothing in them but anger and suffering. If Jay feels that there is more to his life now than suffering, he should post that more often than complaints about his GI tract, his inability to write or even function cognitively at a level that allows any degree of productivity.

(Actually, he said more than that, but the bit quoted above gets to his point.)

Simply put, I still have a pretty good life. I’m miserable a fair amount of the time, and scared almost all the time, but I still have [info]the_child and Lisa Costello and a host of friends and family around me. I still watch videos, read a little (though not nearly as much or as swiftly as I used to), go out to lunch, and even get on planes or in cars and go places. My life is full of love, entertainment and distraction.

But those stories aren’t so interesting. Some of them aren’t even mine to tell.

As I’ve said on multiple occasions, my own story, the tale of my illness, death and dying, is the last story I do have to tell. My happinesses are specific to my own life. My sufferings are emblematic of so many other lives. That’s not ego talking. That’s the experience of blogging my cancer journey these past five and half years, and receiving countless amounts of email and comments and in-person feedback.

When I see a movie, or eat a good meal, or have a nice evening with a friend, that’s not really news. That’s just me living my life.

But as I collide with the limits of my disease and my death, and the financial, legal and medical processes around it, that’s news. It’s information. When I write about it, I put a voice to something many other people experience in silence, and I bear witness to something many other people have not yet encountered.

At any rate, that’s how I see things. And so this is what I talk about on my blog. Just as in fiction, where we rarely tell stories of happy, well-adjusted people whose lives are going well — where is the dramatic conflict inherent in that? — in my blogging, I rarely tell stories of my happy, well-adjusted days. I’m too busy experiencing them.

Not to everyone’s taste, to be sure, including presumably Ron’s. But it’s the story I have to tell.

[cancer] Assisted suicide and the will to live

Yesterday someone asked me why, if I was so miserable, I didn’t go ahead with assisted suicide, as provided for by the Oregon Death With Dignity Act. Voluntary euthanasia has been legal here for many years, the primary criteria being that the patient is mentally competent to request it, the request be made both verbally and in writing, and that the patient be terminally ill with six months or less to live.

While I frankly didn’t appreciate the question very much, on reflection I realized it was a fair one.

The short answer is my will to live. As Lisa Costello has said, if will to live were sufficient for survival, I’d live forever. I can imagine letting go in the very late stages of my terminal decline, if I were overwhelmed by the physical and psychic pain of dying, but not short of that.

The slightly longer answer is that [info]the_child needs me. My lovers, friends and family need me. I need me. Like most people, I dwell in the center of an interwoven tapestry of love and obligation and joy and desire and support, and I don’t want to tear myself out of that place any sooner than I have to.

The more complex answer, as simple as it may be on the surface, is my atheism. Despite thousands of years of wishful thinking and uncountable faith narratives from virtually every human culture, there is not one shred of objective, repeatable evidence for the survival of self beyond the death of the brain. When I die, I will experience personal extinction. That’s not a belief, that’s not a theory; that’s a simple, empirical fact borne out by the experience of every human being who has ever lived and died before me. While I’d love to be an exception, given that basic truth of course I want to hang around the party as long as possible.

One final point: once I’m dead, I won’t know the difference. But many other people I care about will. So for them, I live as long as I can.

[personal] Busy, busy

You know it’s been a tough couple of weeks when a transcontinental flight followed by a 180-mile nighttime automobile drive seems like a relaxing day.

For example, on Monday I did the following, roughly in this order:

  • Oncology consult to discuss the new scan results
  • Bank deposit and pick up held packages on the way back from the clinic (yes, on Veteran’s Day, thanks to ATMs and a friendly business that does my receiving)
  • Sort out birthday presents for the family party I am missing this coming weekend due to being out of town
  • Clear a substantial email backlog from Orycon weekend
  • Telephone meeting with financial planner
  • Multiple followup calls and emails to meeting
  • Review documents and email responses to estate planning attorney
  • Pack for return trip to Maryland to help Lisa Costello settle her parents’ affairs there
  • Telephone meeting with disability attorney
  • Fill out additional forms for disability carrier
  • Followup call and email to disability carrier
  • Photo shoot for John Picacio art project
  • Therapist appointment

That’s what my life is like these days. While I am sick and unfocused and on long term disability because I can no longer work. So, yeah.

On the plus side, our long drive last night was so we could spend part of the day in Rehoboth Beach, Delaware, one of Lisa’s favorite old haunts. A little time to relax before we jump into the logistics of dismantling her parents’ lives here.

[food|repost] Open lunch in Bowie, MD on Saturday, November 16th

This is a repost for an event this coming Saturday. If you have already RSVP’ed, I do not need an additional RSVP. I you haven’t RSVP’ed but are planning on coming, please let me know.

As Lisa Costello and I will back in Maryland next week, I am declaring an Open Lunch in Bowie, Maryland on Saturday, November 16th. We’ll meet at DuClaw Brewing Company in Bowie Town Center at 11:30 am.

If you can read this, you are invited. Whether we’re old friends, casual acquaintances, or you’re an Internet fan/lurker, you are welcome to attend.

Please do RSVP in comments or by email so I can try to secure a suitably sized table.

See some, all or none of you in Maryland at the end of this week.

[conventions] Orycon, day two

Had quite a nice day here at Orycon yesterday. Good breakfast with my dear friend [info]bravado111. Did a panel on political systems in SF (and fantasy) which was ably moderated by Brenda Cooper. Enjoyed a lovely lunch with con com chair Lea Rush and Jacob E—. Spent my afternoon visiting in the lobby bar and crashing out in my room, with an eventual touch of the party circuit. About the speed I move at these days, so it all worked out well. Saw lots of old friends and new, and got some nice one-on-one time with a few folks.

Today, the Lakeside movie is showing, then I have a panel on reprints. Lisa Costello is coming to fetch me about 2:30 so we can load out, then we’re off to the Powell’s Authorfest at the Cedar Hills store.

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

[links] Link salad for an Orycon Sunday

Lisa Costello with more on current events in our lives from her perspective

SETI, METI, and Existential Risk — Interesting. Some very skiffy stuff here, for you writers.

Pig-Like Beast Leads Way to Ancient Cave Drawings
— Mmm. Neolithic bacon.

Babies’ eyes may hold early clues about autismIn babies that would go on to develop autism, eye contact became less frequent.

In pictures: Tacloban in ruins — The typhoon in the Philippines is a horrific example of what climate change will bring to the whole world. I sorrow for the people there.

Race and Gender in… Angry Birds?

KKK Imperial Wizard Hates to See Kids in Klan Costumes: ‘There’s No Respect’“Nowadays we’re ostracized … [the way people treat us now] is no different than the way people used to treat African Americans years ago,” he said. No different, that is, than the way people like the Ku Klux Klan treated African Americans. Ladies and gentlemen, your Republican party’s voting base. Self-valorizing paranoia and a blissful absence of facts or evidence-based thinking, plus a healthy dose of toxic insensitivity.

Something Really Insane Just Happened In Congress, And You Probably Haven’t Heard A Word About It — (Via David Goldman.)

?otD: Going to see my movie here today?

Writing time yesterday: 0.0 hours (chemo brain)
Hours slept: 8.0 hours (solid)
Body movement: n/a (away from home)
Weight: n/a (away from home)
Number of FEMA troops on my block forcing children to learn critical thinking skills: 0
Currently reading: n/a (chemo brain)

[cancer] Walking through another portal in the hallway to death’s door

Underwent my bimonthly CT scan yesterday. My oncologist forwarded me the radiology report a few hours later.

Not good.

Not instantly, deathly terrible, but not good.

Their comments, lightly edited for clarity and privacy:

There has been a small amount of growth in the lesions in the lungs and liver, no new lesions though. We can discuss the options, either continue on therapy thinking that the disease is growing more slowly than if off therapy, or look at Phase I options with [the oncologist coordinating trials]. Since the waiting list for Phase I is an issue, we can continue until something opens up.

What this means is that the Regorafenib is losing its effectiveness. The drug has not flatly failed me yet, but the excellent results we’ve been seeing have begun to reverse themselves. That trendline will not turn back around, that isn’t how cancer drugs work. We have to decide whether and how long we want to gamble on partial effectiveness, versus moving aggressively into clinical trials.

In effect, we’re back to where we were in June and July with my life expectancy being 6 to 9 months. The Regorafenib managed to stop that clock for a while, but the clock has re-started. If we’re very, very lucky, we may find a trial that can stop that clock again. Lisa Costello and I see my oncologist on Monday to review our options.

At the moment, I am very upset and pessimistic. It didn’t help that yesterday included the stress of the scan itself, wrangling with legal and disability issues, and a $4,000 bill for legal services in the mail.

This is another irreversible step on the rough path to my own personal extinction. Death has come another leap closer, and I can smell the gravedust on his breath.

I hate this.

[food|travel] Open lunch in Bowie, MD on Saturday, November 16th

As Lisa Costello and I will back in Maryland next week, I am declaring an Open Lunch in Bowie, Maryland on Saturday, November 16th. We’ll meet at DuClaw Brewing Company in Bowie Town Center at 11:30 am.

If you can read this, you are invited. Whether we’re old friends, casual acquaintances, or you’re an Internet fan/lurker, you are welcome to attend.

Please do RSVP in comments or by email so I can try to secure a suitably sized table.

See some, all or none of you in Maryland at the end of next week.

[personal] Flying home this morning, a troubling and busy weekend

We’re flying back to Oregon this morning. We’re having a family part for my agent tonight. My CT is tomorrow morning (and Lisa Costello has a medical appointment as well), then I’m a special guest at Orycon over the weekend, and I have my oncology followup on Monday. Tuesday we hop right back out here to the East Coast to (hopefully) wrap up the key in-person bits of family business.

I’m pretty worried about today’s flight. I took so much Imodium and Lomotil yesterday that I made myself nauseous. My GI never really stopped, even with about 3 days worth of dosage between 10 am and 8 pm. I’ve already started dosing myself this morning. There are too many periods of time during air travel where I simply cannot access a restroom. Even if I get through today with no major difficulty, I’ll spend the weekend being pretty miserable as my body tries to clear the drugs.

So yeah, GI misery and existential terror are terrific combination. Woo hoo.

[personal|travel] Wrapping up (for now) here in Maryland

We’re flying home tomorrow, as I have my CT scan on Friday. That means Lisa Costello and I are wrapping our current round of business with her parents today, so we can move to an airport hotel tonight in order to facilitate our early flight in the morning. We’ll be back next week to finalize, or at least complete next steps, on getting the sale of the house moving as well as some smaller issues of property disposition.

Her dad is doing quite well, given the severity of his stroke. Everything has been going far smoother than we’d feared. A trip which might have been very, very difficult has mere been difficult.

Also, as today is my brother’s birthday, and he lives in the DC suburbs of Virginia, we’ll be having dinner with him tonight.

Me, taking my GI pills to get through today and tomorrow.

See some, all or none of you at Orycon this weekend.

[cancer] Field notes from Cancerland, emotional rollercoaster edition

What I am doing in Maryland

Lisa Costello has posted an update about both her parents’ health and her own health. It wasn’t mine to tell, in any detail, but now that she’s gone public, I’ll add a bit. We’re here mostly doing the legwork to close out her parents’ life in Maryland. Lisa’s mother’s sister and her daughter are handling the healthcare and relocation end of things, as they are moving to live with the extended family in Missouri. My aforementioned GI problems are keeping me close to the hotel bathroom, but I’ve been talking with attorneys in two states, and as of today, will today begin interviewing and working with real estate agents in order to list their house. Plus there’s a lot of property that needs to be disposed of on their behalf. It’s a busy time, oddly punctuated by the rhythms of her parents’ health and of my own health.

Further GI follies

Due to an attorney meeting yesterday, I had to double down on GI meds. As of this morning, the gurgling has started again. I’m pretty sure I am in for an explosive day. I discussed a day or two ago my fear of this state of affairs being the new normal. You work with what you have in this life, but I’ve been pretty miserable at both the micro and meta levels.

Disability issues

One of my disability providers is challenging my benefits based on the Social Security status of [info]the_child and her mother. This despite me being in clear compliance with the policy requirements, and having provided all the needed documentation. Put simply, they think I’m concealing information or flat out lying to them. My case has been turned over to the ‘Financial Recovery’ unit of my disability carrier. So once again we are back on the presumption-of-fraud merry-go-round that characterizes the disability benefits system in this country. I can’t say more than that right now as this is an ongoing legal matter, but I will observe that the last fucking thing I need is something else to worry about. I am at significant financial risk from this, and could conceivably wind up having to pursue further legal action. Which will suck up untold amounts of time, money and mental/emotional bandwidth. Gee, thanks guys.


The next CT scan is this Friday, three days from now. This is the first scan since I began taking Regorafenib where we might reasonably expect to see the medication beginning to fail and the return of my explosive tumor growth. The normal life cycle of the drug is six to twelve months, and this is the six month mark. My oncological hypochondria is already very stirred up by the recent increase in my side effects issues. So, yeah, screaming panic barely suppressed would be a fair description of my current emotional state.