While we’re exchanging pleasantries here, in semi real time – although this column will not be most read until March 6th (I need to submit it on Monday, March 3rd as we go to press on Tuesday, March 5th), I feel the obligation, given how last week’s column ended, to update you on the results from my February 26th CT Scan. Presumably, by the title you all have determined that as of this writing, Saturday, March 1st, I have not heard back from my oncologist. Typically, I would have already heard from him, electronically. But so far, not a peep, electronic or otherwise and believe me, I’ve been checking, as you might imagine.
I made it. It’s five years after receiving a terminal diagnosis on February 27, 2009 from my oncologist: stage IV non-small cell lung cancer, accompanied by a "13-month to two-year" prognosis. Let’s be honest, medical professionals don’t toss around the word "terminal" because you’re going to be treated at an airport. Presumably, they know their facts and figures as well as the patient’s present condition, confirmed by a variety of diagnostic results from X-Rays, CT Scans, P.E.T. Scans, lab work and of course the ever-popular biopsy, so their diagnosis/prognosis is a bit more than an educated guess. Nevertheless, there are exceptions to every rule and until proven otherwise, I was not about to succumb to their statistics. Still, based on the best medical knowledge available at the time, this patient (yours truly) was given a limited life expectancy and encouraged to take the vacation I had always dreamed of – for obvious you’re-life-is-now-shorter-than-you-ever-imagined-type reasons, and yet, five years hence, here I am.
Not to state the obvious (which I readily admit I do), but to be given a terminal diagnosis: stage IV, non-small cell lung cancer, along with a rather disappointing prognosis: "13 months to two years" is a challenging set of extremely unexpected (given my immediate family’s medical history) circumstances. I don’t want to say that I live under a dark cloud – because I don’t like the negative implication or reaction it conjures, but I definitely feel as if I have a metaphorical sword of Damocles hanging over my head; which I only refer to as an-out-of-context Three Stooges reference wherein a non-Stooge was innocently standing under a pie which Moe had thrown to the ceiling and there it stuck, hanging precariously over the character’s head. Now I still don’t know the proper historical context of the sword of Damocles, I only know the Three Stooges version, but there was some imminent danger involved (not death, mind you), but rather a falling pie which ultimately landed flush on the character’s face as she looked up to make further inquiries. Nevertheless, pie issues/references notwithstanding, having seen my oncologist today while being infused and receiving a big smile/ "you’re going great"/thumbs-up set of gestures/reactions while reclining in my Barcalounger with a chemotherapy I.V. dripping medicine into my right arm, is the kind of super-positive feedback with which I can live. Along with my every-three-week pre-chemotherapy lab work and my every-three-month CT Scan followed by my every-three-month face-to-face appointment with my oncologist, this is how I roll. Worrying about upcoming tests, waiting anxiously for results, trying not to anticipate good, bad or indifferent; living day to day and trying to appreciate my good fortune and the unexpected above-average quality of life with which I’ve been blessed – for a terminal cancer patient, that is.
Not that I minded it in the least (in fact, I appreciated it in the most), but I received my first senior discount the other day. I was fast-fooding at my local Roy Rogers restaurant when the unexpected kindness occurred. Considering that I’m not at the age yet when such discounts are typically available, I certainly did not (do not) presume that my appearance somehow reflects an age which I am not. In truth, I don’t believe it does. So even though I didn’t ask for the age-related discount, I was offered/given it nonetheless. As the cashier tallied my bill, she then spoke the price and adjusted it downward 10 percent for my surprise "senior" discount. On hearing the lower price and the reason for it, I immediately responded: "Oh, you’re giving senior discounts to people over 40?" To which she replied, while looking me directly in the eye: "No. Over 30." Laughing at her quick-thinking quip, I thanked her again for the discount and commended her on her excellent answer/customer service.
Today I was eating a Tootsie Roll, and while chewing it, felt something sharp against my gum. Knowing my candy, sharp I should not feel, so immediately I stopped chewing in hopes of locating the sensation; which I did. It turns out that I broke off the top half of a previously (years ago) installed dental crown. Fortunately, the crown was still in my mouth, so I was able to retrieve it. Upon closer examination of it and the now crown-less tooth, it appears that the crown and the tooth are completely intact (undamaged) and perhaps a simple re-cementing at the dentist’s office awaits, a repair achieved much less expensively than replacing the entire crown. (I can hope, can’t I? After all, I am a cancer patient; hope is what I do.)
Since March 6, 2009, nearly five years now, save for nine months when I was taking an oral chemotherapy medication at home, every three weeks I have been infused with some sort of chemotherapy drug. In that time, I have certainly become familiar and fairly well-known to the various staff at The Infusion Center. What follows is the most recent exchange with the receptionist in Oncology, as best as I can recall it.
Since it had been more than a few months, today I summoned up the courage to Google my long-time friend and fellow stage IV lung cancer survivor, Suzanne. Suzanne and I had been years out of touch (for no real reason other than initiative and the geographic consideration that she lived in Barnstable, Ma. and I live in Burtonsville, Md.) and recently back in touch – due to our identical cancer diagnoses. I learned that she had succumbed to her disease back in October, 2013. We last had contact electronically back in the summer. She was extremely weak then, she said, too weak to talk, so e-mailing was best. In that e-mail, ultimately her last, she wrote that the most recent chemotherapy drug with which she was infused was no longer effective and that her oncologist had no other drugs left to recommend. Not that she said it in so many words, but at that point her prognosis was grim. She offered that her two boys were with her and from them she would gain great comfort. The news was very unsettling to me and I was afraid that this e-mail might be our last – and so it was.
I don’t mind being alive, really I don’t. Occasionally though, I receive well-intended inquiries – electronic and otherwise, from people (who know my cancer story) who are sort of wondering if perhaps I’m not. When people haven’t heard from me in a while – and this is a category of people with whom I don’t have regular/recurring interactions, but rather a group of people who reach out and attempt to touch me (figuratively speaking) every three or four months or so – there is a presumption on their part that my silence (so far as they know) is not in fact golden, but rather ominous, as in the cancer might have won and yours truly didn’t. And when I respond, their pleasure/relief at my not having succumbed to the disease is quite positive, generally speaking. Their honesty and joy in learning that I’m still alive is both rewarding and gratifying. Rewarding in that they care and gratifying in that I must be doing something right which enables me to sustain myself through a very difficult set of medical circumstances: stage IV, non-small cell lung cancer, the terminal kind (is there any other kind?).
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.
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.
As much as last week’s column, "Scanticipation" was about my looking forward – in a non-foreboding way, to my scheduled CT Scan on the 27th and the presumptive positive (not negative) results, having to write a column for this week before having received those results makes this writing effort particularly challenging.
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.
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.