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[cancer|travel] Yesterday I did something arguably very stupid

Yesterday I flew from Portland to Omaha. This on the first day of bounceback from chemo series three, session two.

Day one of bounceback is generally kind of rough, energy-wise. However, I do best in the early mornings at every stage of the process. Because biorhythms or something. So Lisa Costello and Ace Jordyn got up real early and hauled me to the airport, where I checked in sans peur, sans pitié, and even managed to get routed through PDX’s new TSA Pre✓™ line.

We’d prepped me with a travel back with copious snacks, as well as my required pharmaceuticals. Once in the airport and sorted out at my gate, I took a Lorazepam. I also burned from Frequent Flyer credits to get myself bumped up to First Class on both legs from PDX to OMA. The net result was early boarding, a big seat, and a lot of sleep in flight, both legs. Frankly, it was more restful than staying at home would have been.

On arriving in Omaha, I discovered I’d managed to lose my favorite hat somewhere in transit. (This from Blue Dolphin Charters in Kauai.) Grr. Otherwise no damage done. I covered up with face creams and a scarf, rented my car, and headed to my hotel, where I lay down for the day.

Mission accomplished.

Interestingly, Shedding Day [ jlake.com | LiveJournal ] also began yesterday. This is two days early per my usual pattern. I wonder if the relatively high level of physical activity on my part (ie, changing planes, driving myself around Omaha, etc.) sparked my GI to move faster. Also, last night I was in some small but material pain from peripheral neuropathy in my hands and feet. Also unusual. Clearly the activity pattern matters a lot. I wonder if I can put this to use at home.

I’m off to the Omaha office early this morning, and will probably head back to my hotel early this afternoon. We shall see what we shall see.

[cancer] Not getting much done

It’s been a difficult week for getting much done. I’ve been exhausted post-chemo. For some reason, there have been errands and trips every day, which have burned my spoons. The Day Jobbe has been busier than usual, which has burned my spoons. And I’ve had trouble getting my sleep schedule under control.

I am dreadfully behind on responding to writing and personal emails. I have not been able to get back to the current fiction project, “A Stranger Comes to Kalimpura”. I have not been able to do much of anything, really.

This is only the beginning. Already, I hate this.

[cancer] Running thin

In one sense, I’m doing pretty well this week. I should hope so, this was the first session in this chemo series. But the last couple of days have been pretty stuffed at the Day Jobbe, more so than usual, and that really tells on my energy curves. I’d hoped to write yesterday afternoon, but by the time the end of the workday rolled around, I was bushed.

I doubt I’ll get to it today, either, frankly, due to energy curves again. This disappoints me. But I have to manage myself with kindness and care. And I’m still pretty single-threaded yet this week.

More to come, when I can.

[cancer] Minor notes

Some minor notes.

My recent post on the life logistics of cancer [ jlake.com | LiveJournal ] has gotten some links and reposting from various quarters. I just want to add that almost everyone one of those line items decomposes into multiple subtasks. Sometimes dozens. The discontents of this disease are fractal in their complexity.

Still working through some late stage and end of life thinking. Those are not issues for this year, or even this treatment round, but I think it’s important that I know my own mind and understand my basic options now, while my head is still clear, rather than in some post-treatment panic a year or three down the road. With luck, none of this will be needed, but luck has been in notoriously short supply in my life since cancer became my boon companion.

Made myself cry twice yesterday. On leaving my hotel, I said good-bye to Fred K— the night clerk I’ve been on good terms with for years. We talk about the weather, each others’ kids, my cancer episodes over the year. I realize that if things go a bit poorly, I’ll never see him again. When I got in the car, I was in tears.

Leaving the office at the end of the day, I was talking with one of my co-workers about their father’s death from cancer some years ago, when they were a young adult. They told me one of the things he’d said to them near the end was, “You’re only losing me, but I’m losing all of you.” That really hit me. Once more, I got in the car in tears.

And so it goes.

[photos] Leaving Omaha

It was a good week here in Omaha. Day Jobbery was productive, the balloon ride aboard Emerald City Express was wonderful, we had a grand time at last night’s cheese party special edition of the Omaha Beach Party. I renewed some old friendships and made a new one. Who knows when I’ll be back?

Meanwhile, some photos. (Inexplicably, I failed to photograph the cheese.)

IMG_3464
Bookmark art of and for me, by Dani Martin

IMG_3461
Speed Limit 10

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The breeding population of radios in the bathroom of [info]elusivem and [info]garyomaha

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Their Windows compatible toilet

© 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.

[personal|travel] Forthcoming forthcomingness

Once chemo starts, I’ll be almost completely grounded. There may be one or two quick business trips in the early phases, and I might manage to pop up to Seattle, time and occasion permitting, but I’ll pretty much be home in Portland full time from September 14th through about next May.

Apparently in an effort to make up for this in advance, I am very busy now.

I fly home from Omaha tomorrow. I’ll spend time with Jersey Girl in Portland tomorrow afternoon and evening. I have brunch Sunday morning with another friend, a movie date with Team E— Sunday afternoon, and I’m trying for Trek in the Park Sunday evening with Ellen Eades, [info]davidlevine and some other folks. Monday I have workie bits, an eye appointment, the rescheduled Skiffy and Fanty interview, and a dinner date with an out of town friend. Tuesday I have workie bits, a therapy appointment, am spending some time with [info]tillyjane (a/k/a my mom), and then picking [info]the_child up at the train station on her return from her Seattle sojourn. At the crack of dawn Wednesday, I’m off to Chicago for Worldcon, from there to Baltimore for the Johns Hopkins second opinion consult (and Lisa Costello), then home for port implant surgery and chemotherapy.

I guess I’m getting all my busy done in advance.

Also, if you’re hoping to see me in Chicago, be aware that all of my Worldcon mealtimes have been booked. I still have some bar time/meet for coffee availability.

[cancer] A few thoughts on being seriously ill, with reference to privilege

Two aspects of illness that don’t often get discussed or even recognized are social privilege and process complexity. These are things I’ve commented on before here on the blog, but they’re much on my mind again this week.

Social Privilege

I have a well paid white collar job in a technical field. I work at home. In other words, my commute is two dozen steps, and I can sit down all day to perform my job functions. These facts combine to grant me a form of social privilege which has been critical to surviving chemotherapy thus far, and to surviving the next round as well, without total financial ruin. If I had a job that required commuting, or driving while on work hours; if I had a job that required standing up at all; if I had a job that required continuous attention without permitting unscheduled rest breaks; I would never have been able to handle things as well as I have.

Most people, well or sick, do not have jobs this convenient. This is a profound form of social privilege from which I benefit immensely. The fact that I even had the opportunity to achieve this position is itself part of being white, male, relatively tall, well-spoken and well-educated. Everything from the circumstances of my birth to the accidents of my employment history have combined to allow me to reach this point.

I am profoundly thankful for this.

Process Complexity

As for process complexity, I have to say that the three most ferociously complicated things I’ve ever done in my life in terms of paperwork, nitpicky requirements, tight deadlines and unexpected interdependencies are adopting [info]the_child, buying real estate, and being seriously ill.

When you fall seriously ill, the amount of paperwork and compliance in your life skyrockets. In the name of resource allocation, financial prudence and fraud prevention, American society forces an incredible burden upon its least able members. You truly have no idea how complicated this gets until you have experienced it yourself. It’s a disastrous piece of social engineering that is just one more layer of punishment upon people already experiencing some of the worst moments of their lives, when they are the least capable of coping with the unexpected extra workload. A truly just and compassionate society would provide the reverse — an uncomplicated refuge of safety and healing not fenced in by reams of paperwork and arbitrary deadlines. Not to be in our America, unfortunately.

Note that I say the above as someone who is both highly competent at paperwork, and covered by good health insurance (at least in the American context of “good coverage”). This not even to reference the staggering financial burden that I must endure with my good insurance. Another privilege for me; that I’m capable of managing this, and have close friends and family to do it for me if I fall too ill to keep up.

Speaking of process complexity, I’m meeting with my attorney right before I go into chemotherapy, to deal with some open items in my estate planning and so forth while I’m still inarguably competent in the legal sense of the term. Oh, the things I have to think about right now.

[cancer] The medical and life logistics of treatment

For those just tuning into our program, I’ve had Stage IV colon cancer for four and a half years, since April of 2008. As of last week, I was diagnosed with my third metastasis. In other words, this is my fourth cancer presentation in those four and a half years. Each metastatic recurrence further depresses my life expectancy (this is a statistical observation, not a personal prognosis), and increases the odds of further metastases.

In other words, I’ve been doing this for a while, and I’m quite likely to be doing it again in the next year or so, after I’ve passed through the forthcoming round of chemotherapy and surgery.

Like anything one spends time practicing, I’ve become good at being a cancer patient. I sometimes joke that I’ve gone pro. By the time I finish the upcoming chemotherapy course, I will have spent 18 out of the previous 40 months on chemotherapy, with another 4 of those months spent in surgical recovery. I figure if I spend more than 50% of my time being a cancer patient over the course of years, that qualifies me as pro. Not even counting all the bloodwork and CT scans and whatnot during the off-seasons.

It’s confusing and overwhelming and baffling. The current round also has me seriously evaluating disability and end-of-life issues. I’m not at elevated risk for those right now, but my increased likelihood of recurrence means I need to understand my options going forward.

In no particular order, here are some of the life and medical logistics I have been dealing with:

  • Arranging sick leave, FMLA status and vacation time at work
  • Following up with my oncologist’s office to confirm the FMLA paperwork is being properly filled out and submitted
  • Discussing short term and long term disability plans with my employer’s HR
  • Investigating public benefits options should that become necessary, done by delegation to Dad
  • Speaking to my insurance carrier about cancer case management and coverage, specifically including the second opinion benefit
  • Arranging a complex series of interdependent appointments at two different hospital systems (tests and treatments at OHSU, my home hospital, and second opinions at Johns Hopkins; this has involved several dozen phone calls so far, all of which I have documented in call notes)
  • Getting my teeth cleaned, my eyes checked and a general physical with metabolic screenings for diabetes, cholesterol levels, etc., while I’m still in good baseline health
  • Stepping up my appointment schedule with my therapist
  • Seeing my attorney about literary executorship, estate planning, end of life and power of attorney issues (and doing this pre-chemo while I am still in an unchallenged state of mental and legal competence)
  • Mapping out my likely available writing time through this treatment cycle and beyond
  • Making priority decisions about which projects to pursue, which projects to seek collaborators to work with on, and which to shelve
  • Working out my chemo care schedule, though this is largely being done by delegation to a dear friend
  • Making physical arrangements in my house to support my forthcoming diminished capacity
  • Making care and housekeeping arrangements for the same reason
  • Arranging homework helpers and other support for [info]the_child
  • Spending time with her, both in person and by remote communication while we’re both traveling
  • Focusing on friends, family and loved ones while I have the energy and clarity to speak my mind
  • Arranging my traditional pre-treatment party
  • Documenting this experience in hopes of helping others
  • Telling people I love them
  • Letting go

I’m pretty sure I left a bunch of things off this list, but that’s just a glimpse of what I’ve been dealing with in the week since the diagnosis came down. Being a cancer patient is hard and complicated work, before, during and after.

[cancer] More with the coping

I continue to be stretched very thin. I do okay when nothing is particularly troublesome, but even minor annoyances balloon into huge, angry-making irritants right now. I’m a magnificent example of a pulsating stress ball at the moment.

Thankfully I retain enough self-awareness to be able to know what’s happening when it happens. Two minor issues at the Day Jobbe yesterday really got me going. I managed to control myself sufficiently so as not to spill the stress over into either of those situations.

I hate this. I hate this feeling of loss of control. A large part of the reason why I am a very moderate drinker (even without liver issues in play) is that when I am much past tipsy, I lose the ability to fully self-moderate. (Luckily I am a mouthy, flirty drunk rather than an angry or mean drunk — many of my friends claim not to be able to tell the difference between drunk me and sober me.) This cancer stress is a similar situation, except I can’t just sober up and get over it.

It’s not that I’m a particularly controlled person. Nor am I low affect. As anyone who knows me in real life can attest, I am quite emotional, almost always in socially appropriate ways. I approach the world with passion and interest and engagement. But when stress churns my emotional ground state from happy, optimistic sensuality into peevish irritation, I become someone I really don’t want to be.

In the litany of things cancer has stolen from me, a week or so of moderate irritability pre-scan doesn’t even make the top ten. Probably not the top twenty. But this mood of mine is like a postcard from hell. “Having a fiendish time, sure you’ll be back soon.”

Fuck cancer.

[personal|cancer] Staying busy

Keeping the stress monster at bay here. Had a full workday yesterday, including a lunchtime trip to the optometrist, and drop-in at the blood lab for some basic metabolic panels (ie, not connected to cancer). Interestingly, my eye guy started talking to me about life, fate and cancer in the middle of the exam. I figured I was about to get witnessed to. It happens. Except he was talking about atheism, it turned out. Actually, I’d thought he was a Mormon. I’ve never been witnessed to by an atheist before. We had a fine old time discussing it.

After work I spent some time with Jersey Girl in Portland, then had dinner with [info]mlerules. A bit later in the evening, I spent a little over an hour in front of the camera being interviewed by Donnie Reynolds for the documentary project. Then I watched a little anime with [info]the_child and went to bed early so I could get up and walk this morning.

So, yeah.

Today is rather slower. Work, lunch with [info]calendula_witch, a haircut this afternoon, and some more camera time with Donnie. After today, it gets a lot busier, right on through next week’s Big Festival of Oncology.

It is to gibber in the quiet places.

[travel] Exhausted

I got home last night after midnight, Pacific time. 22 hours after I had awoken in Greensboro, NC. Damn, I’m too old for this shit.

Day Jobbery went well in NC. We had a moderate comedy of errors around rental car issues on leaving the client site, which caused my cohort to miss his flight back to Omaha. I made my flights, had some good luck on seating arrangements, got in a bit of writing and a ton of reading, and got home in one piece, albeit very, very tired.

By pre-arrangement, I’m going in late to work this morning. Even so, afterwards I am headed for the Cascade Writers conference for a pro stint. I don’t like going into a writing event as exhausted as I am today, especially since I need to give a lecture tonight on revision.

I’ll be fine, just meh. No down time for the wicked.

Good thing I’ve got lots of energy!

[personal] Yesterday, all my, um… Wait, what?

So, about yesterday. Well, let’s see. Yesterday included:

  • Exercise
  • Blogging
  • Day jobbery
  • Two houseguests
  • Writing time on Going to Extremes
  • Almost three hours of documentary filmmaking at my house, part of that with my entire family in attendance
  • My parents’ 41st wedding anniversary, with a celebratory dinner
  • [info]the_child stressing out over preparations for her 8th grade graduation on Thursday

And that’s just the parts I can remember this morning. So, umm yeah? Remember how I was going to slow down the week after JayCon? Not so much.

Life, she is for living.