[personal] The weekend and me
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 tillyjane and AH combined forces for a green salad and some challah bread. Plus various desserts.
Also, the_child came home last night from her East Coast adventures, but Lisa and I had zonked out by then, so I still haven’t hugged her hello and heard whatever stories she has to tell.
Laying low today, we’ll see what tomorrow brings.
Posted: 8:14 am Sun December 01 2013 | Comments(0) |
[personal] Giving thanks
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 the_child, who is the light of my life and the devilment of days, as it should be with children.
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.
Posted: 8:33 am Thu November 28 2013 | Comments(4) |
[cancer] Funerals are real fun
The topic de la semaine hereabouts has been my funeral planning. Contemplating one’s own final arrangements is a subject sure to brighten any day.
Dad has been investigating funeral homes and memorial marker. kenscholes in his capacity as a former pastor has been giving me advice and talking points about memorial services. Mother of the Child has been giving me her thoughts and feelings about the process.
I get hung up on a couple of points as I walk through all this. One, the whole discussion just makes me want to cry. Two, what is the proper balance between my desires and the needs and desires of those closest to me?
The first I just deal with. So much of my life is devastating these days, what’s one more incitement to grief?
The second I think I have a solution for, at least in my context. We’re probably going to have a small, private set of observances at my time of death and shortly thereafter, probably to be led by Mother of the Child’s Buddhist pastor.
Sometime a bit later on, a larger, public memorial service for my extended family, friends, fans and whoever wants to show up, will likely be led by Ken. That will be the last JayCon and/or the second JayWake, depending on how one wishes to look at it.
For the most part, my own desires are nebulous. In simplest terms, I won’t be here to care. But I am very mindful of how the rituals of my death affect the grieving processes of the_child, her mother, Lisa Costello, and the rest of my family and friends. At the same time, it would be the height of hypocrisy for my cooling corpse (well, cooling ashes really) to be sanctified in a religious framework. Can I be a hypocrite when I’m dead?
There’s all kinds of details: Scattering the ashes? Memorial diamonds? What plaque and where? Much of this will be handled in a series of meetings next Monday.
I do know what I want for the epitaph on my marker. It comes down to a choice between two different things I wrote in Kalimpura.
“What are years to me? Like pain, they pass unnoticed.”
“In end, so is the beginning. In the beginning, so is the end.”
The first is more obscure but pointed. The second is more universal but borders on the cliched. Neither can sum up my life, any more than any epitaph ever can for anyone. The dying process itself sums up one’s life.
So it goes.
Posted: 7:07 am Fri November 22 2013 | Comments(3) |
[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 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.
Posted: 4:15 am Thu November 14 2013 | Comments(16) |
[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 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.
Posted: 7:03 am Wed November 13 2013 | Comments(18) |
[cancer] Living in the present because there is no future
Lisa Costello and I were talking about my emotional landscape yesterday, as we are frequently wont to do. I mentioned sometimes feeling envious of the young and healthy people with which our Portland life frequently surrounds us. We started to pick at that a little — it’s a very out of character emotion for me — and I arrived at an unhappy conclusion.
What I envy isn’t their youth and health, it’s their sense of the future.
As a terminal cancer patient, I have no future anymore. I only have today. I can’t plan anything more than a month or two ahead, and missed opportunities in my life will never get a do-over. No more dreams of going to Antarctica or spending a year living in Hong Kong or writing another book or seeing my daughter start her adult life.
Don’t get me wrong. My life is still pretty darned good. I live under enormous pressures that push me to the breaking point, but I still get out of bed every day. I am surrounded by love, laughter, delicious food, and entertaining people.
But there is no more.
We read and hear a lot of wisdom about being in the moment, about living for today. It’s pretty good wisdom, as wisdom goes. But when you have no choice but to be in the moment, that’s a different matter entirely.
I am lucky to even be alive at this point, let alone as relatively healthy as I am. I know that. But damn, do I miss having a future.
Posted: 6:41 am Thu October 24 2013 | Comments(0) |
[child] The Child turns sixteen today
Today is the_child‘s sixteenth birthday. We will be celebrating quietly as a family this afternoon, but I felt that I ought to mention this milestone.
Love you, kid.
Photo © 1998 S. Lake, reproduced with permission.
Posted: 6:49 am Tue October 22 2013 | Comments(1) |
[child|photos] In which we visit a neurobiology lab
Over the weekend, thanks to the good offices of our friend B—, the_child and I visited a neurobiology lab at a major area research institution. Her friend S— came along as well.
We had a terrific tour of the project our friend B— works on, along with a pretty good overview of lab procedures and equipments. Plus we got to see actual neurons in their glia-infused petri dishes. As I said, like potato chips for zombies.
Science was discussed, research processes were reviewed, and fun was had by all.
As usual, more at the Flickr set.
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.
Posted: 6:50 am Wed October 16 2013 | Comments(2) |
[cancer] Field notes from Cancerland, eclectic edition
I continue tracking side effects. I now monitor blood pressure daily, as my friend Regorafenib drives that up. I have a nifty iPhone app that records BP, pulse and weight. I’m looking for a poop tracker as well, just haven’t yet sat down and focused on this. We’ve got the overnight sleep issues under control with the combination of Trazodone and Lorazepam, though daytime fatigue and napping needs continued. We’re dealing with unexplained gradual weight loss. (Well, actually its unexplained gradual reduction of food intake, so the weight loss per se is perfectly explicable.) The feet as always trouble me, and my GI has gone back into horrible overdrive.
Financial and Legal Planning
This is going pretty well. We’ve got budgets going forward for me both pre- and post-mortem, and the long-term estate plan in place to provide for the_child and her mother after I pass. My ongoing survival makes planning a little more complex, but there you go. I could have worse problems. I’ve also been consulting with counsel about the intersection between intellectual property income and disability income. We seem to have a plan there as well, but are awaiting some confirmation of the legal opinions rendered thus far. Soon most of this will be off my plate except for some ongoing management and reporting requirements.
Writing and Publishing
I continue to not write. I expect this state of affairs to last the rest of my life, as whenever the current medication fails and I go off it, that will not signal a return to health and full cognitive capacity, but rather an entry to my period of terminal decline. We might yet get lucky with a study drug, but I would be beyond amazed if any other core cancer fighting drug left my brain any more clear than the last five treatment rounds have.
Publishing, on the other hand, is going swimmingly. Several fun and interesting things are happening, and wait to be announced. Some big, some small, some just right. Watch this space for details. Let’s just say I’m happy with the progress.
Thanks to the generosity of Unnamed Benefactors, both Lisa Costello and I will be at World Fantasy Convention in Brighton next month. I am flying over a week early, and hope to spend a day or two in Paris, otherwise be in London. If you’re a European friend or fan who’d like to see me, watch for announcements about exactly when and where I can be found. Plus at the convention, of course, with Lisa.
In news about which I am inordinately pleased, I will be a french fry tester today for a small regional restaurant chain. I’m not sure how much I’m allowed to say about this, so I may or may not report more after the fact. But for some reason, this seriously tickles my fancy.
Mmmm. French fries.
Posted: 7:24 am Tue October 01 2013 | Comments(17) |
« Older Posts |