Archive for Personal
More weird, restless sleep, with weird, restless dreams. Something about the weather, or the heater in my hotel room, or my unsettled spirit, has kept me awake nights. This time it was vehicular arson as part of some large coverup, except I was very bad at cleaning up evidence of my misdeeds. The car in question in my dream was my first car, an orange 1976 Datsun 710 station wagon I drove in college. Not hard to interpret what that means, really. All in keeping with the melancholy of my visit here.
A friend who has been out of town all this past week is meeting me for breakfast, then taking me to the airport. American Airlines yesterday cancelled my flight this morning. Getting rebooked involved spending over an hour on hold with the Aadvantage Platinum desk (apparently hold times for the main desk were running closer to twenty-four hours). I am dubious of my new connection through Chicago O’Hare, mostly because of ORD’s chronic problems with delivering timely wheelchair transfers. Basically, in my experience they are incapable of doing so at that airport.
None of that matters so long as I get home tonight. Today is Lisa Costello‘s birthday, the last one I will likely ever be alive for, and I’d like to see here thereupon, and I have two oncology appointments tomorrow. So, yeah, this terminal cancer patient really needs to get home today.
Even so, my weather karma has brought not only deeply subfreezing temperatures and inches of snow to Omaha, it appears to be doing the same to Portland today. Unseasonable here in Nebraska, almost unheard of their in our part of Oregon.
And I’ll have the long trip home to think about how I feel about having been here one last time.
Wish me luck, I’m going to need it.
It’s 13 degrees outside, with a windchill below zero, and snowing merrily. Supposed to accumulate two to four inches today here in Omaha. Luckily I am flying tomorrow, which is supposed to be clear and calm, though still colder than Dorgau’s hindmost paps.
Low-key day today after yesterday’s roaming about the wilds of southwestern Iowa. I think we’re catching a movie this afternoon, and an early dinner. Another friend may pop by the hotel to visit a little while this evening, weather and schedule permitting.
Last night I had, as usual, complex dreams. The part where my house was flooding to the window sashes in clear, warm water wasn’t hard to understand. My bladder has a sharp voice in my nighttime wanderings. The part where Zachary Quinto leapt out of a wrecked VW bus to attack me with a badminton racquet was a little harder to interpret, but I went with it. After fighting Mr. Quinto off, of course.
That last part is odd. While I often dream about real people, either directly or in the form of a dream avatar, I quite rarely dream about people I do not actually know personally.
I’ve spent time with the folks from my prior Day Jobbe. That was good but also sobering. I went on disability there just shortly after my tenth anniversary of service. That makes the Day Jobbe my longest-tenured employment in 26 years of working professionally across three related industries, by a fairly substantial margin. A big part of my life. It was work I enjoyed, with people I (mostly) liked, in a field where, while I wasn’t exactly working for the betterment of mankind, neither was I helping make anyone’s life worse. It was also work which enabled me to have a writing career through a good work-life balance and a decent paycheck. And, later it on, it was work of a sort that allowed me to segue into the deeper phases of my illness without an abrupt economic disruption, both through disability-friendly management and workplace policies, as well as a very good benefits package that turned out to make a critical difference in my life in at least three different ways.
So a lot to reflect on here in Omaha. Plus, well, Zachary Quinto. And snow.
Yesterday was quite fine, but I overslept badly last night, in more than one sense of that phrase. I was asleep, or at least nominally unconscious, for nine hours. My sleep was very fitful, and plagued with odd dreams, mostly about unsuccessful attempts at travel insofar as I can recall.
Once again I woke up later than I hoped, and have wound up feeling rushed this morning. I have a tentative 10 am appointment at my hold workplace, and a firm 10:45 am leading to a group lunch. I’m planning to spend the afternoon with
How can I feel so busy when logically I am taking things easy? One of life’s sweet mysteries. Meanwhile, efforts proceed apace on securing clinical trials, and various other life issues such as car repair, fixing my broken recliner, and dealing with the problems I’ve been yammering about of late. As for the personal generosity that has been shown to me this week, thank you so very much. You know who you are…
Off to the cold soon. It is currently zero degrees F outside here.
I’m in Omaha, where it is currently 10 degrees outside. Because reasons.
Due to travel (which went fairly well, minus a few bobbles) I did not get to sleep until a little after midnight last night. Even allowing for the two-hour time difference between Pacific and Central, this is staggeringly late for me. It is probably no coincidence that I slept solidly for nine and a half hours.
The downside of that is due to a lunch date with a friend, my morning has been very rushed and out of sorts, where I’d expected to move slow and fly low today. Hence also the late blogging.
The Omaha Beach Party meets tonight at 6 pm at Zio’s on Dodge. If you’re within striking distance of Omaha and would like to see me, feel free to drop by. It will be a bunch of writers and friends eating pizza and yakking for a couple of hours.
Meanwhile, being here is bringing a bunch of my mortality thoughts hurtling back to the surface. I’ve spent the years from 1999 to 2013 working jobs either based in Omaha or with a strong connection to Omaha. I’ve visited this city at least a hundred times, literally so — that’s not hyperbole, that’s 8-14 trips a year across most of those 14 years. Omaha represents one of this big parts of my life that has already sloughed away in the face of cancer’s mortal decline.
Still, weather and ruminations notwithstanding, I am happy to be here. I will see my old work friends, and spend the weekend with some of my dearest friends in the world. That is a goodness.
Back to Portland on Monday, and a medical appointment on Tuesday regarding one of my possible avenues for a clinical trial. No rest for the weary. (Well, except that long night’s sleep.)
See some, all or none of you tonight.
Still feeling pretty loopy from this low grade bug. Very much in a state of anticipation this week, and not in the fun way. I’m currently scheduled to fly to Omaha Wednesday for one last round of visiting with my many friends and colleagues there. I’m pretty sure this trip will happen, at least at the front end. Waiting to hear back from various clinical trial sources about my next moves there (NIH and elsewhere). Any of those phone calls and emails could trigger an intake visit at their convenience. Plus I have to sign my updated will and estate planning documents this Wednesday, right before I head for the airport.
Various friends want to come visit. I’ve been reluctantly putting everyone off for the sake of sorting out some of this healthcare stuff. It’s leaving me slightly testy, but I don’t see much point in firming plans which are more likely to fall over than not. At the same, in putting people off I’m putting off things I want to do while I’m in relative good health.
So, yeah. Grumble grumble. I’m alive today, I should be grateful. But sometimes I feel like I inhabit the bottom of a deep well of logistics, and it’s all shifting shadows and angles of the light down here.
Lisa Costello and I both continue a bit under the weather. She thinks we have the same bug, I am not so certain, though she’s probably right. I feel more or less okay in the morning, after a very slow start and a night of oversleeping. By afternoon I am fatigued, logey, mildly headachey, and feel as if I have a fever, though I am not hot. Lisa has much the same symptoms, except with rather stronger headaches.
If she wasn’t going through it with me, I would assume these symptoms signal the beginning of my terminal decline, as they’re pretty close to what I’ve been told to expect. Lisa’s had this for about ten days, I’ve had it for about three. So either a slow moving bug, or the hastening of my demise. Cheerful, eh?
We did have a very nice family-and-friends dinner yesterday afternoon. Lisa sat it out at home, due to how ill she was feeling, and I wound up leaving early for similar reasons. Team E— made smoked pork butt, Jersey Girl in Portland made two potato salads, mom made Moroccan sweet potato salad, while
Laying low today, we’ll see what tomorrow brings.
Not feeling well or focused today. Overslept, listless, tired.
Regular wit and erudition will resume when appropriate.
For now, feel free to talk amongst yourselves.
Today is Thanksgiving here in the United States. For the rest of you, I suppose it’s just Thursday. But whether it’s Thursday or Thanksgiving, this is as good a day as any for giving thanks.
I am thankful to my parents and my family for bringing me into this world and setting me on a path in life which has been more than satisfactory.
I am thankful for
I am thankful for Lisa Costello for joining me in the last days of my life, and sharing love in a time which can be profoundly unloveable.
I am thankful for all the people who love me, and all the people I love. Friends, family, lovers, colleagues, the tribe here in Portland, Ken and John, my postal clerks, the guys at the Lamp and the whole team at Brooklyn Pharmacy — all you people who keep an eye out for me and check up on me and help me in ways ranging from tiny to life changing.
I am thankful for the publishing career I’ve had. I did not achieve even a fraction of my overweening ambitions, but I think if I had done so I’d be a smaller person than I am. One should always aspire to more. In any event, I have achieved so very much more than any rational hope would ever have dared, and for that I am very grateful to my mentors, my fellow writers, my agent and editors and publishers, my readers, critics and fans.
I am thankful for the life I still have, despite the terrible disease which haunts my body every day. I fully expect this to be the last Thanksgiving I ever celebrate, but it is also the sixth Thanksgiving since my cancer first came upon me. I am grateful to all the doctors, nurses, NPs, MAs, technicians, researchers, clinic staffers, and medically-inclined friends who have conspired to keep me alive even this long.
I am thankful to be here, and I am thankful you are here too.
A while back, the delightful Ellen Eades arranged for artist Beverly Toyu to create a life mask of me. This thing was done, and we arranged for some copies to be made. A while back, Lisa Costello went out to Beverly’s studio in the Oregon wine country to pick them up, as documented here: [ jlake.com | LiveJournal ].
Finally, we were able to pull the masks out and look at them carefully.
These are pretty awesome. I love them. Hopefully their recipients will too. My special thanks to Ellen for both thinking of this in the first place, and then making it possible.
Art © 2013 Beverly Toyu.
Photos © 2013, Joseph E. Lake, Jr.
This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
A very longtime friend of Lisa Costello‘s is visiting for the week. She arrived yesterday, and will be enjoying both our Thanksgiving dinners with us, Thursday and Saturday.
Tomorrow I have multiple appointments including therapy, lunch with
On the plus side, I knocked down more of my to-do list last week, such as getting the car titles transferred into Mother of the Child’s name so they don’t get caught up in probate. Yesterday, I went with
So, yeah. Busy.
Yesterday, I had another meltdown. This one was slow and quiet and all the more poisonous for that. Crying jags and panic attacks at least pass after a while, and are readily understood by Lisa Costello or anyone else who happens to be in range at the time. Undirected resentment and sullen silence can be mistaken for a lot of other things, none of them very helpful.
It was a difficult day in some ways. I ran into an intractable Quicken problem generated by my bank switching online banking platforms. (See my previous post about being a strange attractor customer service issues.) Email correspondence passed at some depth about the search for a clinical trial that might prolong my life a bit more. I spent time focusing on my funeral arrangements, including a tense conversation with Mother-of-the-Child about that. There were parenting issues. There were minor misunderstandings with the people around me. Lisa at one point confided to me that she’d be feeling a certain kind of emotional sensitivity for a while to come. My response was, “You mean for the rest of my life?” That didn’t sit well with either of us. Mostly, there was and is me dying of cancer.
That last one? It never ends.
So by yesterday evening, I was feeling strung out and unhappy and pissy and strange. A chance remark pushed me over the edge, and I did not recover until this morning.
It’s so damned hard, being careful of my own emotions and others. The people around me don’t feel free to express their negative thoughts for fear of upsetting me. I don’t feel free to express my negative thoughts for fear of upsetting my loved ones, family and friends. We all dance this strange dance of toxic consideration like elephants on ice, slipping and occasionally crashing.
Last night I crashed. I want to tell myself to get over it, but that option is long gone. I want to apologize to Lisa, which I have fully. I want to not feel this way, but that option is long gone as well.
Frankly, I’d rather have the screaming and the tears, then get over it and move on.