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[personal] A slow day and a dinner out

Yesterday we were supposed to do another round of basement cleaning with Team E—, but I was just too tired to deal with it. So we laid low instead. Dinner was still on, though, at Deschutes Brew Pub in NW Portland.

A funny thing happened on the way to dinner. Team E— got delayed and couldn’t make it. But @MiriamAnneW (of Tor, my publisher) messaged that she was in town, and were we free for dinner. So we kept our plan and swapped out our dinner companions. Miriam brought @suddenlyjen (of Donald Maass Literary Agency, my agency), who was delightfully interesting to talk to. And while walking to the restaurant from the car, @radiantlisa and I ran into @PDXjerseygirl (a/k/a Jersey Girl in Portland), so she joined us as well.

A good time was had by all, except for me becoming fairly ill during dinner and not eating much of anything. Still, I lasted almost ninety minutes. Mostly it was funny because of how much the dinner morphed from when we planned it to when we sat down to eat.

You never know…

[personal] A school visit

Last Thursday I did a school visit. Since it was a middle school, I’m not comfortable naming exact details for the sake of privacy, but suffice to say that I sat with an eighth grade class, then a seventh grade class, to talk about writing, cancer, death and other things.

The particular spark for this visit was my recent blog post on kindness and opportunity [ jlake.com | LiveJournal ]. The teacher had assigned that as reading to both classes, then had them write essays about kindness.

I got to hear some of the essays, as well as some related fiction from a writing assignment. I was also told some pretty interesting and serious things by several of the kids. But mostly I got to talk with them.

These days I’m on disability because I can neither work nor write effectively anymore. As a friend said to me last week, we all need meaningful pursuits. While bearing witness to cancer and its challenges is certainly a meaningful pursuit for me these days, that’s a small amount of time spent at a keyboard a few times per week. To be out in the world, talking to people of any age, about the things I think are important: that is a great gift.

I want to thank the classes and their teacher, and Ellen Eades for driving me to and fro so I could have the energy to focus on the kids.

[photos|friends] Back in Texas, back in the day

[info]jtdiii sent me some photos of a trip he and I had taken in high school, summer of 1980 or 1981, to visit my mom in Texas. Ah, memories. I was so entranced that I decided forthwith to inflict a portion of my high school experience on you.

Texas Trip 3
Me, louche and feral at about sixteen, and already with the impeccable taste — note the dashiki and cowboy boots

Texas Trip 5
A warm smile and a pretty face always made me popular

Texas Trip 7
Lunch with [info]tillyjane, a/k/a my mom, and the neighbors

Texas Trip 2
More fine outdoor dining

Texas Trip 4
Loading up in my mom’s cowboy Cadillac to go somewhere or another

As usual, more at the Flickr set.

Photos © 1980, 1981, 2013, J. Dillon. Reproduced with permission.

[friends] A fine visit just concluding

The delightful and talented [info]elisem has been visiting Nuevo Rancho Lake since Saturday. Sadly, she leaves today. It’s been a lot of fun to have her here.

She has gotten to spend time with [info]the_child and with Lisa Costello. Elise also fit right in to our family fajita party on Sunday. We had hoped to go to the coast yesterday, but the remains of a Pacific typhoon have been setting rainfall records around here, so that seemed like a poor idea. The three of us adults did manage a light dinner at Veritable Quandry last night, which included three orders of duck cracklings with hoisin sauce — basically crack cocaine on a plate.

The most fun, though, has been watching Elise make shinies. She has been narrating her process, and she and I have been talking a lot about the creative process in general, via both art and writing, as well as some about death and dying. I’ve seen her make five or six pieces here, and each one has been an act of evolution and grace. An amazing privilege from a good friend.

Anyway, she is off today, as we are heading to the airport soon. It’s been great to see Elise here.

[personal] A fun weekend

Yesterday afternoon, Lisa Costello and I went out to McMenamin’s Edgefield. Located at the old Multnomah county poor farm, the place is basically an 80-acre art project, featuring architectural preservation, glass blowing, ceramics, sculpture, wild gardens, vineyards, a winery, a distillery, a hotel, a spa, about a dozen bars and almost as many restaurants ranging from casual snacks to fine dining. It was amazing. We will be going back, probably a lot.

A friend is coming to town this afternoon for a few day’s visit. We all have a fajita party tomorrow afternoon on the porch of AH and [info]tillyjane (a/k/a my mom). And it’s a cool, rainy Oregon autumn.

I’m down with all this.

What are you doing this weekend?

[cancer] Disability insurance blues

The disability process rolls along in fairly good order. A combination of foresight, luck and social privilege on my part means I will neither starve nor go bankrupt in the process of dying of cancer (assuming nothing really weird happens to my healthcare coverage along the way). I continue to not discuss it in detail for confidentiality reasons. However, a number of issues go on bubbling below the surface, per the comments below. And yes, I am receiving advice from competent counsel as well as a financial planner and a CPA. So I’m not at sea on all this. I’m just frustrated. Meanwhile…

[info]snippy responded to my recent post about the frustrations of not working [ jlake.com | LiveJournal ] with the following comment:

It’s not right. But neither is giving a portion of the available support to people who are defrauding the system, because that portion is then unavailable to people who really need it.

Hard cases make bad laws, and one bad apple spoils the whole barrel. This is why, even though I believe it is unethical, I think we should move to a guaranteed minimum income for everyone with higher taxes on incomes over $100,000 to pay for it. No income limit on SS taxes either. (I believe it is unethical because of the negative effects on some people’s characters, but the practicality overcomes those objections-no bureaucracy, no verification requirements, those things save money that then goes into the fund for minimum income distribution.)

To which I made a further response which I wanted to kick up to its own blog post here.

Except in my case, I’m not defrauding.

My private LTD policy was an employer sponsored benefit for which I paid the premiums out of my own pocket post tax. Its entire purpose was to provide partial income replacement should I become disabled working that job. Assuming the policy is actuarially sound (which isn’t my problem either way), the premiums I paid fully offset the cost of the benefit I am now claiming.

However, if I receive any other disability income (such as SSDI), my LTD carrier deducts value of those payments from my benefit.

This is exactly the same as if I paid for a $20,000 life insurance policy and a $10,000 life insurance policy, but the carrier for the $20,000 policy only paid me $10,000 because I had the other policy also in place. How is this not flatly stealing from me? (Well, I know how, because this is how disability law is written. But it’s written to flatly steal from people in my position.)

Furthermore, the LTD benefit is tax-free to me because of the way my premiums are structured. The SSDI benefit is taxable. I have just replaced a goodly portion of the LTD benefit with my SSDI benefit, and that dollar-for-dollar replacement is now subject to tax. Again, I flatly lose. Why?

Finally, the LTD benefit is specifically built around my statutory employment, designed to replace that income, again in a presumably actuarially sound manner. How is it relevant that I might have other income such as royalties from writing reprints, given I paid premiums for partial replacement of that specific income stream, into a policy designed for that purpose?

A similar set of issues pertains to the SSDI award itself, including the question of whether royalty income from work performed prior to the date of disability is considered offsetting income. One portion of the SSA rules says this is not, another portion says it is. They are flatly contradictory on the letter of the rule. What the heck am I supposed to do with this? Any fraud examiner looking at my case could choose either interpretation as it pleased them. I’m pretty sure SSA will always choose the interpretation that allows them a clawback.

I’m not defrauding anyone. I’m in a complex situation where even asking the questions could trigger a fraud audit, costing me a great deal of time and money to defend myself. It’s very, very frustrating.

[travel] Why the flights to New Zealand were so messed up

We left our house about 4 pm on Tuesday, July 30th. Traffic was terrible getting to the airport, and I began to worry about timely check-in, except I discovered via FlightTrack that our flight was delayed. When we got to the airport in Portland, then line to reach the counter was incredibly slow. This was due to the previous San Francisco flight being cancelled, and thus everyone having a problem requiring special handling. In this day and age of low staffing levels and machine check-in, exception handling becomes a disaster for both the airlines and their passengers.

We were essentially the third party in the check-in line, and yet as people at the counter were being helped, the United Airlines agents kept disappearing. We had arrived around shift change, and they were going off one by one. When we finally did get helped, there were two agents left, and the line behind us had grown enormous.

It turned out that San Francisco’s airport was on a 120-180 minute air traffic delay due to runway slowdown caused by a combination of heavy fog and smoke from forest fires in southern Oregon. However, long haul and trans-Pacific flights were not on the same delay. This meant our delayed connection would arrive after the non-delayed flight to Auckland had left.

The United agent spent twenty or thirty minutes going through all this with me. The next day’s flight was full due to the number of people who’d missed connections that day. We would have to come back two days later. Even then, if the fog and fires were continuing, we might be right back in the same situation. We looked at routing through Los Angeles, Honolulu or Vancouver. Because of the recent Pacific typhoon, Honolulu was impossible, and seats through the other two cities were unavailable due to the overflow from the problems in San Francisco and Honolulu. They could get us to Sydney via a later flight out of San Francisco, but for some reason could not get us from Sydney to Christchurch, which was our original destination. They could get us to Sydney to Auckland.

It was either go to the wrong city 1,000 miles away that day, or come back in two days and take our chances with continuing flight delays. We took the Sydney-Auckland routing.

This is how we wound up going to Australia by accident.

This whole process took better than half an hour, and wound up tying up both available agents as the line behind us grew both enormous and irritated while no one new came back on duty at the United Airlines desk..

The change had some other implications as well. Going trans-Pacific on United instead of Air New Zealand resulted in us being seated in United Economy, which is a lower class of seat than we had on the original Air New Zealand flight. (If you’ve never flown United, they have an Economy Plus, which is reasonable economy seating with more leg room, and regular Economy, which is cattle car seating.) On arrival in San Francisco, after being wheelchair transported to our United international departure gate, I wound up buying us Economy Plus upgrades to restore the legroom we’d purchased with the original tickets. That set me back almost $600, but I figured 13 hours with our knees crammed up around our ears was going to make all three of us crazy.

Also while in San Francisco, I tried to book Air New Zealand domestic tickets from Auckland to Christchurch, to complete our routing. (Mind you, I’d already paid quite a bit of money for tickets to Christchurch with the original booking.) Unfortunately, by the time I was able to deal with this, I was on the aircraft, and could only use my iPhone. Air New Zealand’s Web site is not iPhone compatible, and kept freezing about halfway through the booking process. You might well imagine my irritation at this.

To further compound the issue, when [info]danjite and [info]khaybee tried to book us that same ticket from inside New Zealand after some frantic text messages from me, the pricing for an in-country booking on the exact same flight was more than double the pricing for me to book from San Francisco. I was looking ay $NZ215 per seat, they were seeing over $NZ500 per seat. Which would have been fine, except the Web site didn’t freaking work from the U.S. Air New Zealand was forcing us to buy at the higher price.

I held off.

The United Airlines flights from Portland to San Francisco and San Francisco to Sydney were fine in terms of the in-flight experience. Assuming you don’t mind spending 15+ combined hours seated in Economy class.

It got complicated in Sydney. We were transiting, so did not need to clear customs or immigration, but we did need to go to the transit desk for our Air New Zealand boarding passes. Air New Zealand does not seem to have any staff in Sydney, as everything is handled by a third party contractor. Our tickets were screwed up due to the re-route, and the counter person at the transit desk had a lot of trouble even getting us the Auckland boarding passes. When I tried to negotiate a re-route to Christchurch per my original ticket, I was told that only someone with access to the Air New Zealand booking system could help me. That included absolute no one in the Sydney airport due all the ground staff being third part contractors. There was literally no one present in the Sydney airport (at least in any way accessible to me or the counter agent) with either access to the Air New Zealand systems or authority to do anything to problem solve. Then they had trouble with our luggage routing. Then they couldn’t get my name into the system. My full legal name includes a “Jr” after the “Lake”, and this apparently causes fits to the Sydney airport computers.

Much as in San Francisco, this whole process took almost half an hour, tied up the only available Air New Zealand contract transit agent, and generated an enormous and irritated line behind us. And no matter what we tried, we couldn’t get to Christchurch. Which was the original destination we’d paid almost $6,000 to reach in the first place. I was told to call the airline’s customer service number to discuss my Christchurch routing. Except, not having an Australian capable phone (remember, we went there by accident, so I had not activated an Australian voice or data plan), I could not do so.

When we got to our gate, I used the airport Wifi to finally make my Auckland-Christchurch booking. I spent about $NZ650 to do this, but it at least got us to our destination, about eight hours later than intended, at the overseas price rather than the doubled domestic price.

Combined with the United seat upgrades, I was now out $1,200 in unplanned expenses.

Once again, the in flight experience was very nice. Much better than any U.S. airline I’ve flown, ever.

On arrival in Auckland, it got weird again. We came in at the international terminal. I’d requested a wheelchair assist which came in the form of a very pleasant young man named Chris. We got through immigration just fine, eventually collected our bags, but got hung up in biocontrol. Lisa Costello had a pair of hiking boots we hadn’t properly declared on the forms. This got us pulled aside by a polite and methodical Detective Inspector for an interview and the shoes being taken away for processing and decontamination. Lisa is now in the New Zealand biocontrol database as an offender and was sternly warned that a repeated offense would have substantial penalties. Apparently, the fact that we were let go without paying a large fine was an act of generosity on the part of the Detective Inspector.

All of this, however, soaked up an immense amount of time. I was pretty worried about making the connection. This is especially true in Auckland, where the international terminal is completely separate, and due to the nature of our bookings, we couldn’t just pass our bags through the transit area and continue on. Instead, we would have to exit the international terminal, proceed to the domestic terminal and check in from scratch.

No disabled access was available between the terminals, my wheelchair aide could not take me there, and the intraterminal shuttle had been discontinued. This is kind of a problem. Lisa Costello and [info]the_child took the luggage on trolleys and walked the ten or fifteen minutes. I waited for the city bus, which eventually came, then dropped me at the other terminal.

Domestic check-in was a nightmare.

Air New Zealand operates on a very low-service model, even more stripped down than US airlines. This again means if exception handling is required, too bad for the passenger. We were nothing but one giant exception.

First of all, the check in machines would have nothing to do with us. I’m not sure if this was the recency of the booking or our US passports or what. There was only one person at the service counter, and a line of about twenty young women — a volleyball team, I think — was waiting there. At that point, we had less then an hour to make our flight. The women were very nice to let us cut in front of them.

Our local tickets were not much of a problem, though my “Jr” seemed to give them more issues, but our luggage was. When we’d originally booked and packed, we had an international ticket all the way through to Christchurch. The international weight limit is 23 kg per bag. That’s what we packed for. The New Zealand domestic weight limit is 20 kg per bag. Absolutely no exceptions. No option to pay overweight fees. Because this was a separate booking, due to the earlier in-flight issues, we were stuck with the 20 kg limit. This involved some significant and urgent repacking. The reasons we’d arrived with a 23 kg bag were happily irrelevant to the Air New Zealand counter rep.

Then either we were given the wrong instructions for delivering the baggage to the carousel, or we misunderstood them. We dragged our bags over to the bag checker, but were not in proper form with the tags. They were rather brisk with us, then ostentatiously began a long personal conversation with another employee while we were trying to ask for help in getting things right. Eventually we go sorted despite the passive-aggressive rudeness of the Air New Zealand baggage handler, and trundled off to our flight.

Again, the in-flight experience and cabin service were fine. Arrival at Christchurch was fine. But the whole trip experience…?

Most expensive tickets I’ve ever bought. $1,200 extra in costs along the way. Abominable customer service from Air New Zealand and poor customer service from United Airlines. Terrible airport systems designs that are profoundly punitive to anyone with an issue that doesn’t fall neatly inside the anticipated workflow. Eight hours late with an accidental trip to Australia.

All in all, the worst flight experience I’ve had in many, many years. Neither United Airlines nor Air New Zealand is responsible for the San Francisco flight delays, but all the issues and expense that flowed out of that problem could have been handled much, much more gracefully than they were.

I will never, ever fly Air New Zealand again, and strongly urge that anyone considering a trip on that airline reconsider any other possible option.

[cancer] CT scan results (good as it gets these days)

Yesterday afternoon, I heard from my medical oncologist about that morning’s CT scan. Their comments were:

“Similar findings from the last CT, the liver and peritoneal lesion are improved or stable, the lungs are a bit larger. Nothing new that I can tell. We can continue on with therapy, and can discuss more in person.”

Some of the tumors in the lungs are actually a bit smaller, if I’m reading the CT report correctly. Everything else is stable or shrinking.

What I take away from this is overall continued mild improvement. This is significant because lately my tolerance for Regorafenib has also improved. We were concerned that might mean that drug effectiveness was reducing. Apparently not, at least at this time. We will be discussing with the oncologist today.

I am so profoundly relieved. Lisa Costello is profoundly relieved. [info]the_child, her mother, my parents, my siblings, my friends, everyone is profoundly relieved.

Two more months of life. For all that they are life-giving, these increments are deadly to my morale.

[travel|photos] New Zealand travelog recap – our last day in Auckland

On August 14th, we packed up our hotel room in Auckland and fooled around town a little before heading for the airport. It was a glorious, difficult trip, organized and given to us as a gift by [info]danjite and [info]khaybee. We had peak experiences and dreadful moments, which I suppose is true of any trip.

In the next few days I’ll post some overall observations about traveling in New Zealand, plus a full accounting of the messy business that was our trip out there. For the moment, a few last photos:

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