Pioneering Change For Autism
University of Virginia seminar studies tension between “The Science & Lived Experience of Autism.”
Despite a recent surge in attention and research over the past decade about autism, controversy exists.
Column: 'Bulky Boy'
Although this title invokes the nickname of one of my three male cats – Andrew, to be specific – he is in fact not the point of th is column.
Column: Accommodate or Exacerbate
As a diagnosed-as-“terminal” cancer patient (is that better, Rebecca?), I feel I am due some accommodations. However, when offered or given, I am hesitant to accept (not always, though; I’ll be honest).
Column: B.D. Versus A.D.
If my experiences as a cancer patient/ “terminal” “diagnosee” are at all typical, then the following generalization might in fact be true: certain situations and/or feelings that were once tolerated before diagnosis are nearly impossible to tolerate after diagnosis: traffic, waiting in lines, rudeness, compromise, sacrifice, delayed/deferred gratification, to list just a few. Life becomes so much more precious, that wasting some of it – or the perception of wasting some of it – on unpleasant, unrewarding, aggravating, stressful, menial tasks, obligations, duties, etc. becomes almost too much to bear; on a consistent basis, anyway.
Column: Back on Track
Having reread last week’s column a time or two now, I’ve realized that I neglected to update you regular readers – especially those of you who read my most recent pre- and post-scan columns: “Abyssful” Ignorance and Scant Know For Sure Anymore – on the previous week’s scan results. Once again, I have defied the odds – maybe statistics would be a better word?
Column: On A Tangent
Not that I live day-to-day or even month-to-month, but I do live – in my head anyway – quarter-to-quarter; that interval representing the usual and customary time between my recurring diagnostic scans. The time when the rubber hits my road.
Column: 'Abyssful' Ignorance
Hopefully not. But you never know – per last week’s column, until you know. And the preferred pattern seems to be that waiting to be spoken to in person, a week or so post-scan, is the best the process can be; or at least, that’s the process that suits the doctor/HMO.
Column: 'Scant' Know For Sure Anymore
After six years, four months and two weeks since being diagnosed with stage IV, non-small cell lung cancer (the “terminal” kind), I can say with certainty that I have no sense of what my next CT scan, scheduled for July 15th, will indicate. Previously (multiple scans over multiple years), I’ve felt something in my upper chest/lungs where the largest tumors are located and the subsequent scan showed nothing of consequence.
Column: My Manifesto, Sort Of
Being diagnosed with a terminal form of cancer (no, they’re not all “terminal”) is “a heck of a thing,” to extrapolate a bit from Jim Valvano’s memorable 1993 ESPY Awards speech given a few months before he succumbed to his cancer.
Column: Quality of Life
Throughout my nearly six and a half years of cancer treatment, starting at the initial Team Lourie meeting on February 27, 2009, when my oncologist suggested I take that vacation I’ve always dreamed of (to which I exclaimed “WHAT!?”), my quality of life has always been important to him.
Column: Gone But Always Remembered
As Father’s Day approaches, (written Thursday, June 18th) I am reminded of one of my father’s standard lines which characterize his positive attitude on life, for which I am eternally grateful – because I inherited it.
Column: Philosophically Speaking
Recently I attended a “Celebration of Life” event, sponsored by Kaiser Permanente, created to bring attention to, and educate the public on, cancer. As a long-time cancer survivor, nearly six and a half years now – and one treated by doctors at Kaiser, I was asked, along with a cervical cancer survivor, to sit on a “survivor panel”; to share our cancer experiences, and offer, along with two oncologists and a pulmonologist, our respective insights as “treater” and “treatee.”
Column: Weight For It; Wait
Given some post-chemotherapy eating challenges I’ve experienced during the past few months, and the subsequent weight loss which has occurred, my oncologist has prescribed Dronabinol, common brand name: Marinol.
Column: Mad Man
Really, Matthew Weiner; on the penultimate episode of “Mad Men,” Betty Draper/Francis had to be diagnosed with lung cancer with her life expectancy said to be “nine months,” with nothing more than “palliative care” available?
Column: In Contrast
Commentary
Even though my previous CT Scan “looked good,” nonetheless I am already, two months out, thinking about my next scan, scheduled for July 15. I am not nervous or anxious about it yet. But I am something.
Column: Why Fi?
Commentary
“That’s the dream; to have Wi-Fi in the car.” So says one of the focus group participants (“real people, not actors”) in a recent television commercial from Chevrolet. The answer is to a question asked of five adults to identify which car brand: Mercedes, BMW, Chevrolet, Ford, or Toyota, includes “Built-in Wi-Fi” in their product line.
Column: “CT Looked Good”
Commentary
Cryptic? Hardly. Words I can live with the for the next three months until my next CT Scan? Absolutely.
Column: Deep Space Mind
Commentary
A few years back (OKAY, more than a few years back; I’ll blame the cancer for my time lapse), there was a spin-off from the original Star Trek: Star Trek: The Next Generation captained by Jean-Luc Picard (a.k.a. Patrick Stewart) which itself spawned two other spin-offs: Star Trek Voyager and Deep Space Nine (commanded by Avery Brooks, a.k.a. Captain Sisko).
Column: Pins and Needles
Commentary
This column isn’t about acupuncture or knitting, any more than last week’s column was about nausea.
Column: The Fact Is Not Yet The Matter
I don’t know which is worse: the extra-special, extra-expensive, dental cleaning (the kind that requires Novocain and involves the actual dentist, not merely the hygienist) that I have scheduled for April 8th – or my next hopefully-not-do-or-die CT Scan, moved up a month from my usual three-month interval because of a suspicious formation seen on my most recent scan back in mid-February.
Column: Manifest Destiny
I wouldn’t say I have symptoms (why would I say that? If I said that, I’d have to admit that cancer is having an effect on me.
Column: Health Matters More
I realize money doesn’t buy happiness, although I wouldn’t mind renting it.
Column: Money Matters
It always does, and there always are; especially if you have to work for a living and cancer is a part of that living.
Column: How Lucky Am I
You’ll note there’s no question mark after the “I.”
Column: Sole-Searching
There’s no denying the emotional fact that the CT Scan results I received and wrote about last week were a bit of a disappointment.
Column: Not So Late This Time
But real-time once again: February 20, 11 hours, approximately, after our regularly-scheduled, post-scan meeting with the oncologist at 10:00 this morning.
Column: Real-Time, Really Late
I’m not a night owl. More of an early bird, worms notwithstanding. But given the contents of last week’s column, “Scantsy,” I find it difficult to write about anything else while waiting for the results of my CT Scan.
Column: ‘Scantsy’
It’s becoming increasingly difficult to characterize the feelings I regularly experience during the final few weeks leading up to my every-three-month CT Scan, and even more so the feelings I experience waiting the following week or so to see my oncologist to discuss the results.
Column: The Past Future is Now Present
Presumably, maybe even obviously, nearly six years into a “terminal” diagnosis, arrangements for a smooth transition of power should have been made already.
Column: Traffic Caught
If I were writing this column in Massachusetts – where I was born and mostly educated (K-12), and had a thick Boston accent, that’s how court would likely be pronounced; changing a noun into a verb.
Column: Seasonal Seven Dwarfs
Sneezy, Coughy, Phlegmy, Stuffy, Achy. No-Sleepy and Post-Nasal Drippy; and no Doc, which is possibly what led to this column being written.
Column: $32.99 Plus Shipping
For one box of 54 petite Belgian waffle cookies in three delicious flavors: milk chocolate, dark chocolate and vanilla; an extravagance to be sure, available during the holidays; this recipient (actually, my wife, Dina, was the recipient) very happy to oblige and indulge.
Column: Down and Not Out, Yet
Thankfully (so far as I know, which isn’t very far), after a five-week interval between infusions, which included two additional weeks of pre-chemotherapy lab work and an out-of-the-ordinary 24-hour urine collection (“creatinine clearance”) to boot – to more accurately measure my kidney function in hopes of meeting a 1.6 threshold – muster was finally passed, and I was subsequently infused without any further adieu.
Column: Level Best
If I wanted to rationalize the benefit of delaying my heretofore every-three-week chemotherapy infusion from three weeks to four and now on to five, possibly six – and that’s dependent on improved results from a second/maybe even third retest upcoming (this retest a bit more involved than drawing blood) – I would say it’s only fitting that I should have a break/brake; after all, it is the holiday season when all good things; yada, yada, yada. If only it were that simple.
Column: The New Normal
Loosey goosey, I suppose. As much as one might prefer some predictability in their life (certainly a cancer patient would – I know I would), I may be entering a cycle of permanent unpredictability.
Column: A Level That’s Anything But
This is not a home improvement reference, but this is most definitely a do-it-yourself column.
Column: ‘Quality of Life’
If I’ve heard it once – from my oncologist – I’ve probably heard it a dozen times over the last nearly-six years.
Column: Since It Ain’t Broken...
Apparently, at least in the near term, we’re (meaning my oncologist) not going to fix it. And by fix it, I am referring to my chemotherapy infusion, which will continue to be every three weeks, as it has been for almost six years; save for a year or so when I was able to take pills at home, and on-site infusions were not necessary.
Column: ‘Shrinkage’
Not exactly “like a frightened turtle” as “similed” on a long-ago Seinfeld episode by Jerry himself; this shrinkage is the good kind, the kind you hope a radiological oncologist characterizes when viewing your CT Scan (computed tomography).
And The “Scancer” Is…
Unknown at this date – Saturday, November 15. In fact, it will be six days from now until we’ll know the results. As it is always scheduled, a week or so after my quarterly CT Scan, we will have our usual follow-up, face-to-face appointment with my oncologist. At this meeting, I am examined, and of course, the radiologist’s report of the most recent scan is discussed, and plans for the future – stay the course and/or adjust or switch altogether – are considered.
“Shrinkage”
Not exactly “like a frightened turtle” as “similed” on a long-ago Seinfeld episode by Jerry himself; this shrinkage is the good kind, the kind you hope a radiological oncologist characterizes when viewing your CT Scan (computed tomography). Specifically, the exact kind of scan I get every three months to assess and evaluate the tumors, and fluid, in my stage IV, non-small cell cancer-affected lungs.
Column: And The “Scancer” Is…
Unknown at this date – Saturday, November 15. In fact, it will be six days from now until we’ll know the results. As it is always scheduled, a week or so after my quarterly CT Scan, we will have our usual follow-up, face-to-face appointment with my oncologist.
Excuse Me
Early on during my indoctrination/assimilation into the cancer-patient world in which I now reside, I remember asking a fellow cancer patient/friend if I could use cancer as an excuse for whatever it was needed excusing (directly or indirectly related), and she said: absolutely, “blame the cancer.” Years later, after a chemotherapy infusion, I saw my oncologist walking through the Infusion Center and asked him if my thinning hair might be a result of this most recent chemotherapy drug (not all chemotherapy results in hair loss). His response was similar to what my friend had advised me in 2009. He said: “You can blame me,” (which of course, I understood to mean, cancer/the treatment of cancer) “for anything.”
Dos, Don’ts and What-Ifs
Instinctively, I am not the most open-to-new-ideas/new-things kind of person. However, an unexpected diagnosis of stage IV, non small-cell lung cancer (NSCLC) at age 54 and a half – along with its equally unexpected “13-month to two-year prognosis,” changes a few things. And thanks to a great friend, Rebecca Nenner, whom I have written about previously, I have/have had to become more open, and consequently, have assimilated into my life many non-Western, non-traditional alternatives (pills, supplements, super foods, activities/behaviors, etc.) with which I was totally unfamiliar (I’m a sports and chocolate kind of person), in an attempt to outlive my prognosis.
Column: Excuse Me
Early on during my indoctrination/assimilation into the cancer-patient world in which I now reside, I remember asking a fellow cancer patient/friend if I could use cancer as an excuse for whatever it was needed excusing (directly or indirectly related), and she said: absolutely, “blame the cancer.”
Column: Dos, Don’ts and What-Ifs
Instinctively, I am not the most open-to-new-ideas/new-things kind of person. However, an unexpected diagnosis of stage IV, non small-cell lung cancer (NSCLC) at age 54 and a half – along with its equally unexpected “13-month to two-year prognosis,” changes a few things.
Running Out of Efficacy
Not that I’m the least bit worried (actually, I’m the most bit worried), but surviving a terminal cancer diagnosis years beyond one’s original prognosis does present its own unique set of problems. Most notably, and most personally for me, they concern treatment options. Specifically, what drugs, targeted or otherwise, can be infused and/or swallowed (when in pill form, like Tarceva) and for how long, when signs of internal organ damage are indicated on regular lab tests?