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[personal] Going home today

Had a nice dinner last night here in Seattle at the Bellevue location of Maggiano’s.

photo(7)

Eighteen people in all, so that we overflowed the banquet room had to calve off a small sub-party. More food than twice our number could have eaten, and quite good.

Lisa Costello and I are hanging with the Pitts family this morning, then off to a small brunch, then heading home, so’s I can see [info]the_child by suppertime, and hear all about her weekend at the beach with her mother.

Back in the saddle tomorrow, including the usual Day Jobbery as well as a telephone consultation with an oncological geneticist.


Photo © 2013 Joseph E. Lake, Jr.

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[cancer] One example of the weird things sick people have to deal with

Our system is so strange, and so unkind to the seriously ill. Insurance and benefit processes are optimized to mitigate fraud, not to help people in need. That means real people in real, desperate need have to jump through sometimes bizarre hoops to achieve compliance. This at a time in their lives when they are least equipped to deal with bullshit. As I’ve said before, I wonder if it would be cheaper to remove all the complex infrastructure of compliance enforcement and fraud management and just accept a percentage of free-riding scammers in any given benefit program. Basically, shift the overhead to kinder place. Not that we’ll ever do that, because of the apparently horrible thought that someone, somewhere, might be enjoying an unearned benefit at our expense. As a society, we value punishing the non-compliant far, far above the value we place on actually helping people in worst need of their lives.

Sobeit. That’s the system we live under. During the 43 years I enjoyed the privilege of good health, I didn’t question it either. I don’t really expect healthy people to question it now. Once you need the system, it’s a bit late to start protesting. Frankly, none of us seriously ill people have the time and energy to do so. We’re too exhausted trapped in our conditions, and too busy dealing with the Byzantine healthcare and benefits systems. Meanwhile, very few of you healthy people are even aware of the need to do so.

So here’s the latest wheeze: Disability benefits.

Like most people with a white collar job, I have coverage for both short term disability (STD — Yes, I know. Quit giggling in the back.) and long term disability (LTD). STD is a benefit my employer provides, LTD is an elective benefit that I pay for with a little dip into every paycheck.

As it happens, determining what qualifies as a disability under either coverage umbrella is a pretty strange process. STD isn’t quite as weird as LTD, but it has its quirks. The rules are complex and contradictory, and require cross-referencing different systems and rulesets written to differing standards. In LTD, for example, the question of whether I qualify under the rules of the Social Security Administration (SSA) affects whether or not I will qualify under my private, employer-sponsored, self-paid plan. Likewise, the precise information my physician provides to my health insurance carrier can make a significant difference.

I’m not seeking LTD yet. I don’t need it right now. But I am trying to understand the process so that if and when my cancer goes terminal, or if I reach a point where I will likely be in continuous treatment for the rest of my life — either or both of these things are probable in the next year or so — I’d like to know what to do. STD applies to my forthcoming surgery leave, albeit with some weird conditions.

Something cropped up yesterday in the LTD discussion that struck me as especially strange. (My Dad has been researching a lot of this for me. As a retired senior Federal bureaucrat who’s managed some very large budgets under Federal accounting rules, as well as living under the strict requirements of high level security clearances for almost four decades, he’s quite good at sorting out paperwork and rules.) As it happens, I hold a small LTD plan as a rollover benefit from a job I left over a decade ago. I pay a modest quarterly premium, and the plan will provide me with a modest supplementary income should I ever claim LTD status. Their criteria are, of course, different from that of the SSA or my employer-sponsored plan.

Yesterday, the payroll department at my Day Jobbe informed me that according to the rules of my employer-sponsored LTD plan, any income from other LTD sources, including SSA or my privately-paid LTD plan, will be deducted from my employer-sponsored LTD benefit.

What? The? Hell?

I pointed out that this was both illogical and punitive, and asked what the reasoning was. The response I received was sympathetic but unhelpful. Basically, they don’t know, and they also find it weird. To be clear, my employer has been fantastically supportive through these past five years, both in terms of corporate policy and in terms of my individual managers and co-workers. I am very lucky to work where I do. They are not creating this problem in any direct sense. I told payroll I would be consulting an attorney, and they asked me to please share whatever opinion I received with them.

Here’s what I see as the problem in this case. If I’m wise and foresighted enough to have a separate LTD benefit paid for privately, what does that have to do with the insurance plan that would pay out my LTD claim? Presumably their premium rates and actuarial calculations are geared toward paying full benefit. My secondary, private plan is essentially income supplementation, as the employer-sponsored LTD pays out at 66-2/3% of my income level. So because I was smart enough to buy “gap” insurance against the possible income loss, now I am to be punished by having the amount of that “gap” benefit deducted to cap me at 66-2/3%? What possible justification is there for this? How is this even legal?

Note that health insurance carriers do something similar, but it’s logical enough. They’re trying to avoid double paying claims. That makes sense to me. But health insurance plans don’t work on a defined benefit basis. They’re at-need, and they’re paying for that need. With two carriers covering the same patient, they can negotiate amongst themselves as to which carrier will pay what percentage of which needs.

LTD benefits are defined — in my case, 66-2/3% of base salary. Income from other sources is irrelevant to that benefit definition. This would be like your 401(k) provider deducting any other income from your retirement account payout. The LTD benefit is defined, and paid for according to a specific schedule.

I have not yet been able to speak to an attorney. I suspect the answer I’m going to ultimately receive is that this is somehow written into Federal law. This is still an illogical and punitive step on the part of my LTD provider which makes no sense to me. If nothing else, I may as well quit paying the premiums for my private LTD plan, as it is literally useless to me in light of these rules from my employer-sponsored LTD plan.

So, one more example of the kind of weird things sick people have to deal with. While sick and unable to cope with the bizarre details. I’m lucky I have my Dad in the loop, because I can’t imagine how I’d be fielding this all by myself along with everything else.

[personal|cancer] Yesterday’s PayPal kerfuffle

Last night, I felt like a business school case study. Or possibly a character in the kind of folk song sung around digital campfires. In short, PayPal did something unfortunate to cripple part of the Acts of Whimsy fundraiser for my genetic testing and general health expenses. I mentioned this on Twitter. A classic social media backlash ensued, which eventually flowed up to the president of PayPal. All ended well about two hours later, with PayPal restoring my account, apologizing publicly, and making a donation to the fundraiser as a gesture of goodwill. See news story for the official details, including comments from PayPal Senior Communications Director Anuj Nayar.

PayPal made a mistake, and then they made it right. Credit where credit is due. My profound thanks to Mary Robinette Kowal, Tee Tate, and the legion of Twitter and Facebook denizens who spoke up, placing the public pressure on PayPal that caused them to escalate the problem to swift resolution. Likewise my thanks to both the company and to Anuj Nayar, as well as the PayPal social media manager who contacted me directly.

In long…

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[cancer] Things are looking better

As of yesterday, the nine-day reign of terror in my lower GI seem to have abated. I won’t feel certain about this until at least another day has passed without untoward incident, but pace my car-on-ice rhetoric, after 24 hours without any overt symptoms, I have abandoned the antidiarrheal meds.

So far, so okay.

If this business has settled, I can get back to post-chemo recovery, which seems to have gone to Hob for a game of poker with souls. After the colonic spasms of two nights ago, last night I experienced muscle spasms along my spine, along with the more generic lower back and hip pain I normally associate with Neulasta. Except rather a bit later than expected. Because reasons. It’s like the virus that was giving me the horrid lower GI effects was holding everything else hostage, too. (And no, I did not acquire Stockholm syndrome.)

This morning there was great if brief confusion when I discovered the “Monday AM” pillbox empty. Yes, I am going back to work today. No, this is not the day after Sunday. Sometimes I can keep up, sometimes the world is like one of those popup snakes in a can.

I will be so profoundly relieved if the current lower GI reprieve turns out to be a true ending to the madness. This last week has been perhaps my most miserable chemo week ever.

A true Christmas miracle for this atheist?

[cancer] A potentially significant epiphanette concerning fairness

Yesterday, Lisa Costello and I were discussing the emotional infrastructure of cancer, as we are sometimes wont to do. I was on my oft-told riff about allowing myself to experience the emotions of this process as honestly as possible. Grief, rage, loss, and so forth. (The emotion of the day happened to be peevishness, which is one of my least favorite for its sheer pettiness.) I repeated my comment that the only emotion I don’t permit myself is a sense of unfairness. The universe just is, fairness doesn’t enter in to this.

Except then I realized that the whole question of fairness is a more sophisticated concept than that. It falls within the realm of those human elements without correspondent empirical manifestation — justice, mercy, honor, and love, for example. My whole life is unfair in some significant ways that happen to benefit me at the expense of others. I am tall(ish) white man of WASP extraction born in mid-twentieth century America. The degree of privilege and ease that has cloaked me all my life is a form of unfairness to others so pervasive that most people in our society never recognize it all. I was in my twenties before I first began to glimpse my own good fortunes as a social justice issue.

So is cancer fair? No. Neither is my nice, well-paid, white collar job that permits me to work sitting down at home, preserving both paycheck and health insurance benefits in the face of cancer’s unfairness. Instead of taking a leave of absence or becoming permanently unemployed because I don’t have the capability to do my job.

This seems important to me. I don’t know what it means yet, I need to think more, but my denial of unfairness is beginning to feel simplistic and unsophisticated to me.

Your thoughts?

[cancer] A difficult day; and lending grace

Yesterday was a difficult day.

Not profoundly miserable, as some are. More like difficult in a sense that anyone feeling poorly could have. But it had a good ending.

The fundamental problem was that the previous two nights I’d skipped the Lorazepam, trying to find my own natural sleep cycle. I slept poorly but not dreadfully both nights. These days, deep in chemo, I have no reserves for that sort of thing. So while none of my chemo side effects were particularly out of control, my body wasn’t happy, even by my current admittedly lax standards.

Then I got drawn into a family squabble that didn’t directly concern me. Some unfortunate events, a lot of emotional tension, and one of those annoying teachable parenting moments, stretched through most of the day on the installment plan. This did nothing to improve either my mood or my physical energy.

On my lunch hour from Day Jobbery, I had a phone meeting with my agent. It was positive and constructive, and she is as always a jewel. However, I wound up being very depressed afterwards. We are in effect winding down my writing career, pending further illness. As I observed to her, we can wind it right back up again if I come out of all this with some years of significant time and energy available to me. But that’s not the current assumption. I spent the rest of the day feeling gloomy about my mortality.

By the end of the day I’d been slammed physically, emotionally and professionally. Not the first time, and it won’t be the last, but that made the day difficult.

Then, right at bedtime, I got two emails on the subject of parental mortality. They are not my stories to tell here, but suffice to say that one was sobering but encouraging, the other made me weep because I realized that I might have just for a moment lent someone else a needed moment of grace.

The price I pay for all of this is too high for anything I will ever realize from it, but there are rare moments where it does seem worth the cost and I feel like I got something right.

[cancer] Chemo, chemo, chemo; medicine almighty

Back on the chemo train tomorrow, after a ‘skip’ week due to the Thanksgiving holiday. I always get my chemo on Fridays, due to the need to wear the pump for two days. I’m on the infusion a total of about 52 hours, and the last 46 hours are at home. So if I had chemo any other weekday, I’d have to take four days off work instead of two.

Think about that for a minute, btw. My entire medical treatment schedule is driven by the amount of sick time in my benefit package. Does that seem the best possible basis for treatment decisions? I’m not complaining about my employer, mind you — they have always been profoundly supportive through this process. It’s just the American way. Life-and-death healthcare needs bend to financial and workplace considerations. That’s how we do things in this country.

I’ve been seeing some bounceback. Everything from the consistency of my bowels to the return of my appetite to a weight gain that speaks of my metabolism beginning to recover to a significant reduction in my Vectibix/Doxycycline-induced skin problems. That will all get put paid to tomorrow morning.

This will chemo five of twelve in my third chemo series, and fifth of six pre-surgery. Speaking of the surgery, Lisa Costello and I got to discussing the surgical plan recently (such relationship conversations we have) and the question of how radical my surgical oncologist can be in approaching my liver. This in light of the apparent disappearance of the tumor Rumsfeld, and the apparent containment of the tumors Bush and Cheney. Just speculation, obviously, except for the point they made to me last summer that after two liver surgeries already they cannot make free with this one. As they said, I won’t enjoy dying of liver failure any more than I’d enjoy dying of cancer.

So, for today, my liver and I are still on a tiny bit of vacation.

[personal] What I am thankful for

I am thankful to still be alive after four and half years of Stage 4 colon cancer with multiple metastases.

I am also thankful to still be relatively healthy even with these challenges.

I am thankful that I live in a time, place and milieu of social and economic privilege where that survival has even been possible.

I am thankful that I continue to see my daughter grow into a smart, capable, competent young woman.

I am thankful for her recent personal and academic growth, which has show her she can be successful no matter what.

I am thankful for the love of my family, for Lisa Costello and Ace Jordyn and Jersey Girl in Portland, and all my friends and loved ones from here to the far side of the world.

I am thankful for my writing career, for the opportunity to have written and be read, and for whatever lies ahead, regardless of its trajectory.

I am thankful for my job, and the supportive employer, manager and co-workers who have helped me stay economically stable and under full health insurance coverage all this time. They have often gone beyond the bounds of either duty or responsibility in the name of friendship and support.

I am thankful for all of you reading here, both those who remain silent and those who engage me in comments, via email or in person. Apparently I need an audience, and I am thankful that I seem to be entertaining and interesting enough to build and keep that audience.

Most of all, I am thankful for long and wonderful life I’ve already led. Regardless of where cancer and time’s relentless decay may take me in the future, that past and present belong to me, and they are a gift I will cherish always.

What are you thankful for? (Feel free to post a link if you’ve answered that question elsewhere.)

[cancer] And away we go, to the infusion center again

Off to the infusion center this morning with Lisa Costello and Marta Murvosh. [info]tillyjane (a/k/a my Mom) has a cold, so she will be avoiding me today, while Dad and (step)Mom are out of town. Likewise [info]the_child and her mother are going to the coast this afernoon. It will be an unusually quiet infusion weekend for me, in other words.

Not that I’ll know the difference.

I had a deeply emotional reaction to yesterday’s port access and blood test. This was akin to sub drop, in a weird way. (Weird given that I’m not a sub, I mean.) I eventually got over myself, but continue to operate with a fine patina of melancholy.

On the plus side, [info]amberite dropped by briefly last night. H— should be visiting tomorrow. I might also see Team E— this weekend, and maybe even [info]scarlettina as she passes through town.

On an amusing non-cancer note, yesterday at the Day Jobbe I was filling out a self-assessment as part of the annual review process. There’s a required spell check and legal scan before one can submit the form. The spell check rejected my employer’s name as a misspelled word, and the legal scan was quite concerned that I’d used the word “white” because it might denote inappropriate racial or personally descriptive information, which I should consider rephrasing or eliminating. The word appeared in the noun phrase “white paper”.

I, of course, took screen shots and mailed them out to my working group.

Ah, software.

[cancer|personal] Another chemo, another week

Another chemo done. As expected, they’re getting tougher. The Vectibix rash is already firing up across my forehead, and intensifying on my chest and back where it never went away. I figure for my face to be a major disaster in another day or two. Likewise the emotional and cognitive effects are powerful right now. A lot of stress in the family, especially on [info]the_child, who is taking this all pretty rough. At least my Dad’s ER visit is better.

My fatigue and general single-thresdedness make it very hard for me to follow up on things. By the time I’m done with Day Jobbery — ie, making money to pay the mortgage and keeping myself in insurance coverage to pay the cancer — I am well and truly baked. I owe some signed books from weeks ago. I owe some ARCs out now. I need to close out the Kalimpura caption contest. I need to finish photodocumenting the lovely flood of bells and spoons I’ve received, so I can make a thank you post. I need, I need, I need. I doubt I’ll get any of that done today, immediately post-chemo, and I’ll be lucky to get one element done tomorrow, if my focus isn’t disrupted by the usual round of personal and family crisis that has dominated lately.

I will as always survive, but it’s rough, tough and slow.

[cancer] Trying to be smart

The skin condition, and the severe photosensitivity, from the combination of Vectibix and Doxycycline is driving me nuts. Too bad for me, I guess, as there’s not a lot to be done about it.

Still, the fundamental issue of fatigue is the true killer of chemotherapy.

I made it through the workday okay yesterday. Went in about an hour early, left about an hour early and finished my workday from my hotel room. The Day Jobbe got my full commitment, but by the time I was done driving back and forth, I had nothing left. My friend D— dropped by the hotel after work with some Chinese food for dinner, and some groceries for me to graze on the rest of the week, which was very helpful. (She and her friend M— will be giving me some logistical support later in the week as well.)

But I hate feeling so trapped in my body. Spoons, baby, spoons. And Shedding Day did spill into yesterday as well. With luck, that’s largely over, but foolishly I had a lunch yesterday which included a lot of cheese. I wasn’t thinking about my cyclical post-chemo lactose intolerance.

Smart. Be smart. Be smart about sun exposure. Be smart about skin care. Be smart about energy use. Be smart about food intake. Be smart about resting. Be smart. Be smart. Be smart.

All of that while fatigue makes me stupid and peevish and less well equipped to be smart than ever.

Cancer: it’s a lousy hobby.