Meaning, in my head anyway, the future and what there is left of it. More specifically, I mean life expectancy. When you’re given a “13-month to two-year” prognosis—at age 54 and a half, by a cancer doctor, your cancer doctor—the timeline between where you are and where you thought you’d be when becomes as clear as mud.
The decision for yours truly to participate in a Phase 1 Study at N.I.H. or Johns Hopkins (depending upon availability and qualifications) discussed in last week’s column has been put on hold, temporarily. It seems that my oncologist was thinking about me over the holiday weekend and called me on Wednesday following Labor Day to say he had a diagnostic idea concerning me: a 24-hour urine collection (a “Creatinine Clearance Study”) which would provide a more accurate reading (than the regular lab work I have; from blood) of my kidney function.
I’m not exactly pretending that I don’t have stage IV lung cancer (non-small cell, to be specific), but ever since my hospital admission on August 2nd, I have been treatment-free; no I.V. chemotherapy, no oral medication, no targeted treatment, no nothing. And during this sabbatical (I use that term loosely; being off chemotherapy has been as much about recovering from surgery and recuperating from my hospital “stay-cation” as it was anything necessarily intended), I have progressed from feeling crappy and being short of breath—while being infused previously, to where I have become relatively asymptomatic, breathing normally and for the nearly eight week treatment-free interval mentioned, have felt mostly OK.
Do nothing (no more treatment) and live life to the fullest (for as long as I’m able, and right now, I’m extremely able); start another chemotherapy protocol – with an I.V. chemotherapy drug which, according to my oncologist, has not been proven in any clinical setting to be better than the patient doing nothing; or, try to get into a Study (Phase 1, 2 or 3) at either N.I.H. (National Institutes of Health) or Johns Hopkins (in Baltimore) and let the treatment chips fall wherever experimental/research medicine takes them. This is what my oncologist discussed with Team Lourie at my most recent appointment, my first appointment with him since my hospitalization and subsequent release.
And no, that’s not another made-up phrase by yours truly describing my occasionally cluttered/run-on prose with which many of you extremely patient regular readers are all too familiar. No, it has to do with how I perceive my future now that I’m post-hospital and sleeping in my own bed. Instead of nurses, respiratory therapists, X-ray technicians, doctors and miscellaneous other hospital staff too numerous to list, I have one wife and five cats to do my bidding. And though they’re not nearly as attentive as the hospital staff, I know that they all have my best interests at heart.
Eight days and seven nights. Not exactly the vacation I was planning. Nevertheless, admitted to the hospital on Friday, August 2nd. Discharged on Friday, August 9th: that was my hospital “staycation.” Though I definitely improved as the post-surgical week went on, the process itself – specifically, nearly four days in S.I.C.U. (Surgical Intensive Care) with round-the-clock monitoring, nursing and doctoring – was hardly restful. In fact, if you read the following prose, you’ll presumably develop an understanding of the cons.
Although I’ve not seen the current “The Lone Ranger” theatrical release, I am of a certain age and generation who grew up watching – on black and white television with no remote control and only three watchable channels – the original “The Lone Ranger” (starring Clayton Moore and Jay Silverheels), along with other weekday-afternoon and Saturday-morning classics like “The Rifleman,” “Roy Rogers,” “Sky King,” “Superman,” “Leave It To Beaver” and “Ozzie and Harriet” – in my house, anyway. And though the “effects” weren’t nearly as “special” as they are in today’s movie/television productions/versions, nevertheless, the effects on me, personally, were far greater. Can you say wholesome goodness? The Golden Rule? Do unto others…
How appropriate is it to tell a cancer patient something negative (that he likely doesn’t want to hear) – yet needs to know, and which might ultimately quash his fighting spirit and adversely affect his day – and night? Moreover, would withholding certain discouraging observations intermittently along the cancer-treatment way, in order for said patient to feel good and positive about himself – and better prepare him for any and all news/results which might upset his precariously imperfect life and moreover, likely chip away at his emotional wherewithal as well – cause more harm than 100-percent honesty all the time?
Nor is it a crying shame. But something has changed, dare I say affected my tear duct production. I can’t say with certainty – or even specify a particular moment in time for sure – when the tears began to flow more easily, but I’ll guess the change occurred sometime on or around February 27, 2009, the day I first met my oncologist; the day I was diagnosed with a terminal disease, stage IV non-small cell lung cancer (NSCLC), “prognosed” to live 13 months to two years. If that kind of shocking, terminal-type news doesn’t upset your apple cart – permanently, “You’re a better man than I am, Gunga Din.” And so it has, as reflected in my frequent “salty discharge” (to quote Jerry Seinfeld).
I hope it’s not a wrap though. I’d like to continue rolling along just like I rolled into college in late August, 1972, matriculating to the University of Maryland in College Park, Maryland. Oddly/coincidentally enough, there have been and continue to be some recent occurrences in my life that hearken back to yesteryear, the olden days of the early 1970s, when I freshmen-oriented myself to a major university for the first time.
I don’t think I’m asking too much. I’m not asking for a pony or long life; just a typical life. Unfortunately “typical” might be more statistical than realistic – at least for someone with an incurable disease, which was how my oncologist originally described my lung cancer diagnosis.
If you’re a Three Stooges aficionado like I am, you’ve heard Moe Howard say it many times to Larry Fine and brother Curly as three stooges attempted to occupy space (doorways, windows, closets, etc.), large enough/wide enough for only one stooge. In short, “recede” means: back off, one at a time, mind your manners, and the ever-familiar to us long-time fans: “spread out.”
I don’t mean to be the least bit paranoid, but I suppose that’s because, as a stage IV non-small cell lung cancer “diagnosee,” I’m already the most bit paranoid. A terminal diagnosis of incurable cancer has a way of doing that to you (at least to me it has). Not to blame cancer totally for my behavior, but can you think of a more deserving and appropriate cause of this effect than the “leading cancer killer in both men and women in the United States.” In fact, according to the American Lung Association, “Lung cancer causes more deaths than the next three most common cancers combined (colon, breast and prostate).”
Not that there’s anything wrong with that; in fact, as a four-year, stage IV, non-small-cell lung cancer survivor, it’s amazing to have any security, false or otherwise, whatsoever.
I think about it enough, I don’t want to think about it too much. What’s “it?” Cancer.
Selfless or Selfish
That is the percentage of diagnosed lung cancer patients who survive beyond five years, according to The National Cancer Institute’s SEER Cancer Statistics Review, 1975-2009, in a graph published in the Feb. 26, 2013 Washington Post’s weekly Health & Science section. As a non-small cell lung cancer (NSCLC) survivor beginning his fifth year post-diagnosis, charting my prospects in such a cold and impersonal manner is both chilling and arguable. “Chilling” in that facts speak for themselves and are hardly made up of whole cloth, to invoke one of the late Jack Kent Cooke’s more famous quotes. And “arguable” in that charts, statistics, etc., may very well measure the mean, but it sure doesn’t measure the man (this man, anyway). Meaning, from my perspective: sure, the chart is scary as hell, but I’m not sure I’m on it, if you know what I mean? (I know you know what I hope.)
Having never attended medical school (and not really having had the grades or commitment to do so), and having only completed 10th grade biology and freshman year astronomy, and rarely even driven by a medical school growing up, my understanding and/or instincts regarding how a medical professional plans and/or prepares for his day is as foreign to me as sugar-free chocolate (if I’m going down, I’m going down swinging; in truth however, considering the anti-cancer, alkaline diet I’m following, I do need to swing a little less frequently).
As far as anniversaries go–and I hope this one “goes” a lot further; acknowledging, dare I say celebrating my four-year survival anniversary from “terminal” stage IV (inoperable, metastasized) non-small cell lung cancer, a diagnosis I initially received on Feb. 27, 2009, along with a “13-month to two-year prognosis” from my oncologist, is certainly column-worthy.
My oncologist is a man. He has e-mail. He works for an HMO that encourages/advertises its connectivity and responsiveness – electronically, to its members. If I want to get medical answers in a reasonable amount of time – save for an emergency, typing, “mousing” and clicking is the recommended methodology. No more phone calls, preferably. Though pressing keys on a keyboard rather than pressing buttons on a phone might have felt counter-intuitive at first as a means of receiving prompt replies, it has proven over these past few years to be a fairly reliable and predictable information loop. Not in minutes necessarily, but more often than not during the same day – and almost always by the very next day. In fact, I’ve received e-mails from my oncologist as late as 9:18 p.m. (time-stamped) after a sometime-during-the-day e-mail had been sent.
That is my question. And though I can’t quite quote Shakespeare the way I can quote The Three Stooges: “Moe, Larry, the cheese. Moe, Larry, the cheese,” “’tis nobler” to ask it nonetheless. Still, if Hamlet had been diagnosed with a terminal form of cancer, as I have, perhaps he wouldn’t have been contemplating suicide but rather allocating his monthly budget – as I do every day, with nearly every purchase. That’s my dream, “perchance” or otherwise.
Figuratively speaking, of course. That definition being: a late stage cancer patient/survivor previously characterized as “terminal” awaiting the results of their most recent diagnostic scan. A scan that will indicate whether the tumors have grown, moved or God forbid, appeared somewhere new. If your life hung in the balance before the scan, waiting for results of this however-many-months-interval-scan will most assuredly loosen your figurative grip on your equilibrium and your most literal grip on your sanity. This is a domain, unlike the one referred to in one of the more infamous Seinfeld episodes, that one cannot master. To invoke and slightly rework Dan Patrick’s “catch” phrase: You can’t stop it, you can only hope to contain it.
And a further explanation and corollary to last week’s column: “A Simple Question,” which attempted to sort through my reactions to being asked an extremely innocent, appropriate, well-intended and always appreciated courtesy: “How are you?” and the problem that it sometimes causes me. That problem being: a question which had it not been asked would then not require an answer. An answer that I’ll always give, but not before I’ve given it some thought, which if I hadn’t thought about, wouldn’t have bothered me in the least
Regularly, throughout my now nearly four years of living as a stage IV non-small cell lung cancer “diagnosee”/survivor, I have had conversations where the person with whom I’ve been speaking–in response to a query of mine, said about a particular set of their circumstances: “Oh, it’s nothing, really. I mean, it’s not cancer, so it’s not as bad as what you’re (meaning me) going through.” Said with the utmost sincerity and sensitivity to me of course, and with my feelings/reaction most definitely in mind; for a long time, I simply acknowledged their empathy/sympathy and continued on with our conversation as if no emotional pot–of mine, had been stirred.
Having survived almost four full years from the date of my original diagnosis/prognosis doing what I’ve done, all I should feel is: that anything is possible. I’m living proof.
Today is a day I feel like writing – not merely one when I am looking forward to having written, but rather one when I am interested and motivated by the process.
Like most people, I have material, so to speak, that I use repeatedly (ad nauseam, some might say). Most are lines from “The Three Stooges,” “M*A*S*H,” “Star Trek” (the original) and “Seinfeld.” As I entered into the cancer world, I continued to use this material – where/when appropriate, as many of you regular readers know. However, as my time in the cancer conundrum has continued (thank God!) and evolved, I have found myself uttering and muttering à la “Popeye the Sailor Man,” amusing myself, mostly, but always with the best of intentions: my survival. A few examples follow. (My answers are in quotes.)
Usually, but not always, when I show for my scheduled post-chemotherapy/post-scan appointment with my oncologist, I am physically examined (touching, feeling). Recently, due to some enhanced computer and facility upgrades, I was shown the actual scans, digitized. However, on more than one occasion over the last 18 months or so, after we discussed the results of my most recent CT Scan – and lab work, no physical exam was performed. Apparently, as I later learned, the good results from my scan sort of trumps any need to feel for physical manifestations.
Forty-five months later, I am still dealing with feelings – as in still living, for which I am amazingly fortunate. However, those feelings seem to sometimes have a mind of their own, and accordingly tend to take over and rewire one’s brain (figuratively speaking).
As a stage IV non-small cell lung cancer diagnosee/patient/survivor/anomaly, living long--whether prospering or not, is not the simple and presumptive proposition I had anticipated. No more do I anticipate living the same number of years and in the same relative good health that my parents (both deceased), experienced well into their 80s. Now, my life revolves around my oncologist and the CT Scans and lab work that precede our recurring appointments.
Contrary to last week’s column, if I do pay for it now (things I can’t afford), then I’ll be so in debt later that I may end up saying “bye” anyway--from the stress of it. And if that were to happen; dying with a smile on my face, so to speak, would I be truly better off now anticipating that later was not going to be my problem? Do I want to be a modern day version of George Raft, the American actor from the 1930s and 40s best known for his portrayals of mobsters, who said about his Hollywood money: “I must have gone through $10 million during my career. Part of the loot went for gambling, part for horses and part for women. The rest I spent foolishly.”
Meaning: If I’m terminal, why deprive myself because of cost? If, in fact, I’m only living once – as the old saying goes, and somewhat less of a life than I had anticipated, shouldn’t I, at the very least, “Pull my pants down and slide on the ice,” as prescribed by Dr. Sidney Freedman in an episode of M*A*S*H, way back when?
This reference is not about pounds, per se. It is about the two largest tumors in my lungs, inoperable in that they are located between the two halves which make up the whole lung.
On the one hand, I want to take note every month on the 27th as yet one more notch on my living-with-cancer belt. On the other hand, maybe I don’t need a belt to be notching but rather a life to be living. Perhaps it’s time, nearly 44 months post-diagnosis – at press time, to stop counting backwards and try more living forwards.
It was my father all right – in a dream. Standing five feet away, approximately, in a well-lit, local convenience store with which I am extremely familiar. This was no case of mistaken identity. Besides, he was wearing those blue, terrycloth shorts of his that my mother always hated. So yes, I called out to him, surprised as I was to see him, locally as it were.
In my opinion. It’s what I think. It’s what I feel. It’s what I think I feel. It may not be something I know, but it’s certainly something that I hope I know. And if it’s not exactly something that I know, then I hope it’s something I believe.
Given how I feel now, three-plus years later, and considering the results of this most recent scan, the future may simply be what it is: not now, but later. At least, that’s the way I see it, subjectively speaking. (Now whether “subjectively speaking” is just a euphemism for “unrealistic” is likely a topic for a “future” column.)
Not literally, of course. Nor am I the coach or the general manager. But I do feel like an owner, in that there are people that I invest in – again not literally, but definitely emotionally.
More like replaceable. Obviously, I want to remain positive and believe that today is not a good day to die (Worf from “Star Trek: Next Generation”) and that there will be many more tomorrows to live for and days beyond that to plan for. However, having a terminal disease has a tendency to darken up those rose-colored glasses.
Recently, for the first time in nearly two years, I took a trip without having my car. Significant to me in that not “having my car” meant not being able to transport/have all my cancer things.
Making the best of a bad situation, that’s how I roll (I’m a Red Sox fan after all). Some days are easier than others, some symptoms/treatments/results are better than others. And some columns make more sense than others. But that’s cancer for you: an equal opportunity “screwer-upper.”
Having/being diagnosed with cancer/a terminal disease is neither fun nor funny; however, unless I find some humor or wishful thinking in how I approach this situation, I don’t suppose I’ll be approaching it much longer. To me, it’s always been mind over matter, and even though these matters are rather serious, I still don’t mind.
Having been there and done that now for three and a half years certainly helps. And however familiar it may be and/or has become, it doesn’t exactly help to pass the time or affect the results, unfortunately. Cancer sucks! That much is clear. Now and in the future.
Hopefully will keep the cancer at bay. (I’d say “away,” but let’s be realistic, three and a half years past a NSCLC diagnosis, there is no way, generally speaking, that stage IV lung cancer disappears into the ether; it’s classified as stage IV for a reason.
Now that I can taste food again, or rather have food taste like normal again, my attitude is much improved.
It has been brought to my attention by some regular Kenny-column readers – who are friends, too, and whose opinions I value, that my most recent batch of “cancer columns” (as I call them) were not funny; in fact, they were more depressing and negative than anything, and not nearly as uplifting and hopeful as many of my previous columns have been.
It might be my age (as in getting older), or it might be the fact that I have cancer (you think?), but my brain and the related physical and mental tasks it coordinates are not exactly working at peak efficiency.
If only it were as easy to actually live it as it is to write it. As much as I believe what I write, it’s still difficult to ignore certain facts (“the underlying diagnosis,” as I often refer to my diagnosis) and the feelings associated with it.
Outliving one’s prognosis leads to all sorts of twists and turns and treatment conundrums: the longer one lives, the fewer the treatment options.
It was June ’09 when I published my first column in the Connection Newspapers about being diagnosed with cancer. It was actually a column detailing the diagnostic steps I had taken during the first few months of the year attempting to identify the pain I had initially felt under my right-side rib cage in late December.