On multiple occasions throughout my nearly five years of being treated for stage IV, non-small cell lung cancer, my oncologist has given me opportunities to stop and/or take a break from my treatment, or to consider alternatives to the normal protocols – for the expressed (literally) purpose of sustaining/enhancing the unexpected, above-average quality of life I have mostly experienced during my nearly non-stop, every three-week chemotherapy infusions which began in early March, 2009. The goal being to enable me to enjoy my life and not be subjected to/beaten down by the ravaging and debilitating effects of chemotherapy.
So much of what I feel as a cancer survivor comes from the feedback I receive from others. Positive, complimentary, flattering characterizations are crucial to my optimistic outlook. Negative descriptions, reactions, etc., are not. Not to discount honesty, but the emotional divide on which a cancer patient’s self-assessment/attitude teeters is delicate indeed and honesty is sometimes (I said "sometimes") not the best policy. If I’m in the right mood, negativity can be deflected, absorbed even; not a problem. If I’m in the wrong mood, however, the negative can push me into a black hole of emotional despair. Regardless of whether the comment/observation is well-intended, accurate or even prudent under the circumstances, its effect can be deeply felt. Getting back to normal is not impossible and mostly within my control, but if it’s all the same to you, I’d rather not have to claw my way out.
Considering that I’ve been cancer-centric now for nearly five years, one would have thought I might have learned and totally embraced an alternative concept: forward living – and less thinking about past causes and their possible current effects. Certainly cancer causes physical manifestations and symptoms that are diagnosable and indicative of trouble. But it’s the unseen effects that in some cases cause as many difficulties. What I am referring to is the mental and emotional toll a terminal diagnosis and short term prognosis can have on the patient’s perspective on life and living, and what’s presumptively thought to be left of it.
Since you asked, or rather indulged me the past few weeks by wading through my two "Scanticipation" columns anticipating a result, I am happy to finally share that result with you: "Stable and better." These are the exact words e-mailed to me by my oncologist in response to my post-Thanksgiving inquiry about my CT Scan completed on the 27th.
When I get CT-Scanned on Wednesday, November 27th, it will be nearly four months since my last diagnostic scan. That occurred during my hospital "staycation" during the first week of August, when I was admitted due to the extremely abnormal fluid buildup in my left lung.
As the person primarily responsible for stocking the house with supplies and maintaining miscellaneous inventory, I am frequently in stores (supermarket, drugstore, pet store, etc.) buying the staples (not an office supply reference) our family needs to maintain our lifestyle, such as it is.
But it was only a week, and I was able to leave under my own power, assisted by a wheelchair, which is of course standard procedure when leaving a hospital after an admission, so it wasn’t a total loss. It was three months ago today, Friday, August 2nd that I was "ambulanced " to Holy Cross Hospital where I spent the beginning of my seven, first-ever nights in a hospital; pretty fortunate track record for someone my age.
There’s more talk now than ever before, about the possibility of the Washington, D.C. professional football team changing its name.
If it wasn’t a coincidence, it was the next thing to being one. What it was, was the hiccups; occurring after chemotherapy infusion number one and again after chemotherapy number two. The first episode lasted only a few days and annoyed my wife, Dina, way more than it annoyed me. The first hiccuping episode was fairly constant; however it was not exhausting – and I wasn’t having any trouble sleeping because of them. Nor was I making any disturbing sounds or having any difficulty breathing – when caught in mid-hiccup, and/or eating because of the herky-jerky movements/spasms of my diaphragm. In general, it was a fairly benign effect. In the big picture, it didn’t seem particularly important that it was the hiccups I was having, so I never called my oncologist. It was the hiccups after all. It might as well have been a skinned knee. Jeez. And sure enough, within a couple of days, I was “hiccuped out.”
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.
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.
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.
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
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.
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.