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.
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.
This is not a home improvement reference, but this is most definitely a do-it-yourself column.
If I’ve heard it once – from my oncologist – I’ve probably heard it a dozen times over the last nearly-six years.
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.
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).
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.
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.
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.
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.”
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.
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.”
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.
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.
After re-reading last week’s column: “Not in the Mood,” I began wondering if that column had strayed beyond the boundaries, so to speak, and was too much about me and not enough about my circumstances.
After re-reading last week’s column: “Not in the Mood,” I began wondering if that column had strayed beyond the boundaries, so to speak, and was too much about me and not enough about my circumstances. Certainly I understand, given my column’s recurring theme, that the subjects of me and my circumstances – and the personal stories I share with you regular readers – are basically the same. Still, I never want the content to be considered important because it’s MY life that’s being profiled. Quite the contrary. If the columns were any more about me, you wouldn’t be interested.
Sometimes, believe it or not, I’m not in the mood to be a terminal cancer patient (duh). Not that the effect is particularly tangible, but the weight of it, as well as the associated waits I’ve occasionally written about, can get awfully heavy. Moreover, in spite of my best psychological efforts, generally speaking, there seems little I can do to diminish its effect. More often than not, it’s merely time; simply time passing and/or time spent trying to talk myself out-of how I feel and in-to how I haven’t failed.
Sometimes, believe it or not, I’m not in the mood to be a terminal cancer patient (duh). Not that the effect is particularly tangible, but the weight of it, as well as the associated waits I’ve occasionally written about, can get awfully heavy.
This column completes the three-week arc which describes what I have endured mostly successfully for approximately five years now: chemotherapy every three weeks – with one year off for good behavior (not really good behavior; the year off was to switch to a twice-daily pill, Tarceva, to be taken at home, since the previous treatment was no longer stemming the tide). It’s been my experience that these anti-cancer drugs don’t exactly work forever.
I realize, given last week’s column: “Post-Chemo Week,” this week’s column about the preceding week (week-of, actually) of chemotherapy might be a bit bass-ackward, but it seemed reasonable to me that if you regular readers had an interest in the week-after, perhaps you’d have a similar interest in the week-before.
For the past year, every three weeks I have been infused with a chemotherapy drug called Alimta, “the last miracle drug,” to quote my oncologist, and a drug with which I hadn’t previously been infused.
One of my greatest fears (or regrets, if I am in fact the cause of my own decline) is that my own stubbornness, stupidity, “male blockheadedness” and/or refusal to believe/pay attention to signs, symptoms, indications and instructions/health advisories from my oncologist about my health will lead to my premature death.
As much as I don’t want to be cognizant of date, time and place, relative to February 27, 2009 when Team Lourie first received the stage IV, non-small cell lung cancer diagnosis on yours truly, I am (a terminal diagnosis will do that to you). Moreover, as often as I write about the need to live forward, rather than die backward (if you know what I mean), I still struggle with the application.
…for ice cream; from Brigham’s in Boston, the local New England establishment of my youth where I spent dollars – although it was likely cents back in those days – many afternoons, evenings and weekends.
Not only did last week’s CT Scan indicate shrinkage, where necessary – and stability, where hoped for – it also accomplished these hoped-for goals after only two months of chemotherapy (still infused every three weeks) rather than the normal three months of chemotherapy. So depending on how the calendar/treatment schedule actually fell, I probably received two fewer infusions than usual, yet all the radiological indications – and interpretations – continue to be encouraging; after five and a half years, no less. I think I’m entitled to use the word amazing – and lucky, too.
And so it goes, every three months or so; a CT Scan, a week or so of waiting, and then a face-to-face appointment with my oncologist to learn/discuss the results. Thankfully, the results continue to be amazing. My doctor has told me that I’m his third miracle; stage IV, non-small cell lung cancer patients generally don’t live beyond two years. I’m in year six.
The biggest writing problem that I have, other than the ones you regular readers generally know about, is writing a current column on the weekend immediately preceding the next Wednesday’s publication date, when I am still waiting on results from my most recent CT Scan. This isn’t like putting the cart before the horse, this is more like putting the horse in the cart and pulling it.
Not that I’ve felt that my attitude toward being diagnosed with stage IV (“terminal”) non-small cell lung cancer at age 54-and-one-half was ever to be considered as model behavior, but I do believe, after the initial shock wore off, eventually I assimilated its effects into my routine reasonably well. Not without a million bumps and bruises along the way, however, both physically and emotionally; nevertheless, though time has not healed all that has preceded this column, I’ve managed to find and maintain an extremely delicate balance between “joie de vivre” and “c’est la vie.”
When it comes to being a cancer patient, even more so a multi-year cancer survivor, I have always erred on the side of caution. And by caution, I mean being respectful to the disease, courteous of its comings and goings, mindful of its potential damage and afraid of its intangibles. And by intangibles, I mean the unexplained and the inexplicable, and most fearfully, its power and unpredictability. Therefore, my behavior toward it has been intended to be as polite as possible; never to be perceived – in any way imaginable – as arrogant, presumptuous, in control, all-knowing and most especially, victorious.
At present, July 12th, I’m halfway, approximately, between my last CT Scan which showed a previously unseen silver-dollar sized growth in my lower left lung and my next CT Scan scheduled for August 6th, one month earlier than my usual three-month interval in order to make an evaluation sooner rather than later; to determine if this is new growth or nothing more than old growth that is now visible due to the combination of shrinking tumors and dissipating fluid opening up the viewing area, so to speak. Apparently, the chemotherapy drug, Alimta, with which I’ve been infused every three weeks since last September appears to be doing its hoped-for job: shrinkage.
“Just when I thought I was out…they pull me back in.” Although this quote is from Michael Corleone from “The Godfather: Part III,” it very much characterizes my daily struggle being a terminal cancer patient; non small cell lung cancer, NSCLC, is like that, almost always. Even though I don’t want to think about the fact that I have cancer, or not let it affect my judgment on life – or perspective; or let it impede my path to a happier existence, more often than not, it does.
I think I know what a rampaging bull feels like; and I don’t mean one on Wall Street, either. I mean one in the figurative sense: when one has a need, an overwhelming, unstoppable-type urge, to scratch that itch, to gratify that which has been delayed. What am I talking about? (You sound like my wife, Dina.) I am talking about food. More specifically, I am talking about a side effect I’ve been experiencing of late from the chemotherapy drug Alimta, with which I’ve been infused every three weeks since late September, 2013 (successfully I may add, given the shrinkage noted in my most recent CT Scan).
Forrest Gump knew when he voiced over: "Mama got the cancer and died on a Tuesday. I bought her a new hat with little flowers on it. And that’s all I have to say about that." And if you watched the movie as often as I did (it was one of my mother’s favorites), you may also recall "Mama always said you got to put the past behind you before you can move on."
Growing up in the 60s, if you loved sports, as I did/still do, you spent hours listening to games on a transistor radio. There certainly wasn’t “Cable” television back then; heck, there wasn’t even color television, let alone “HD,” “interactive,” or whatever else television technology has evolved into. And of course, there were no “big screen” television sets either. We had a 19" Zenith black and white television and we received three channels: 4, 5 and 7 (in Boston), and as much as sports was/is important in Boston/New England, viewing options, given the limited VHF/UHF band frequencies, meant listening to games on radio – AM radio. Games were regularly televised on weekends, more so if the home team was playing on the road. As the decades have passed, so too have transistor radios, black and white televisions and limited viewing on only three channels. Between “Cable,” computers, and more recently, the introduction of hand-held devices, access to and familiarity with sports has grown exponentially. Add in the explosion of sports-talk radio and the abundance of sports-themed content on television (regardless of whether the games are at home or on the road) and one could be in his “man cave” for hours on end “channeling” his – or her – passion, for any team, in any city, at almost any time.
And therein lies the anxiety. Although, all things considered – and as you regular readers know, I like, maybe even need, to consider all things – the medical assessment of the most recent CT scan of my upper torso and thorax/lungs showed a new object in my left lung, “approximately the size of a silver dollar,” according to my oncologist. What this object is, exactly, cannot be determined at this juncture; technology prevents such clarity, unfortunately. Nevertheless, its appearance and location are possibly cause for concern, possibly not.
In anticipation of my next face-to-face appointment with my oncologist, the first in three months (as per usual) and considering a breathing issue I’ve been experiencing the last month or so, my wife, Dina (original Team Lourie member) asked if I wanted my brother, Richard (the other original Team Lourie member), to attend. Not that he wouldn’t attend if asked (he’s local); it’s more that I’m wondering if he really needs to attend, as in whether there will be life-changing, cancer-related decisions where all hands need be on deck. Of course, a week before the appointment I have no legitimate clue – nor have I received any suggestions from my oncologist – that anything of substance/recent changes that have occurred (I have also recently completed my quarterly diagnostic scans and am awaiting those results as well) will be discussed; and that’s the point of this column: how frequently, how/when does the patient/survivor know when team members should be present at these appointments?
Just as “everyone knows Geico can save you 15 percent in 15 minutes,” that is, if you watch television, listen to radio, access the Internet or even sit on the beach at Ocean City and watch the single-engine planes flying by pulling banners; so too do people know that when your primary care physician tells you that you need to meet with an oncologist to discuss your recent medical results, you should bring along family, friends, advocates, doctors, lawyers, etc. (your presumptive “team”), because, well, you know why: your life may depend on it.
Since I’m in the honesty business (as you regular readers know; and based on many of the e-mails I receive, commended on being so), if I were to admit anything concerning my behavior during these last five-plus years as a lung cancer survivor, it would have to be my continual tendency to minimize new symptoms, and in turn, not contact my oncologist (which from the very beginning is the exact opposite of what we are told to do). Stupid, stubborn, scared, naive, in denial; you pick.
Although one never knows, especially if that one is living in "cancerville." And by "cancerville" I mean, euphemistically speaking, anywhere where one of us diagnosed with cancer is living. Living being the operative word. Still, as my column from a few weeks ago entitled, "Dying With Curiosity" discussed, cancer patients are often besieged by their subconscious, changing fact into fiction and manipulating feelings into inevitabilities. If only there was a switch to turn off the mind games that don’t exactly mind their "man-ners" or "women-ers" for that fact, I’d flick it in a second. Cancer creates physical problems – as we all know, but I have to tell you, it’s the mental problems that can be just as deadly.
It is not the best of times, nor is it the worst of times; it is, simply put: the time between the end of winter and the beginning of summer. It is the season known as spring, but more to the point of this column, it is the time when, if the weather cooperates/accommodates, I won’t need to turn the heat or the air conditioning on in my house. I will instead be able to ride the wave, so to speak, and not incur any post-winter/pre-summer utility bills. Possibly, I might even be able to pay off my oil-heating budget bill balance for the 2013/2014 season – before the 2014/2015 budget cycle begins, and hopefully not have to cool down the house at the same time – due to an early summer – so that on the day my oil-heating bill is due, it won’t be competing for cash with my upstart electric/air conditioning bill for money not well spent and for money hardly in abundance.
As a born, bread and buttered Bostonian (Newton Centre, a suburb, to be specific), one of my enduring and genetic passions has been to live and die (figuratively speaking; this is not a cancer column) for The Boston Red Sox. My father sold concessions at Fenway Park (the stadium home of the Bosox since 1912), during the Depression when he was a little boy (not yet an adolescent even). He was nicknamed "Beezo," (his given name was Benet, although he was always called Barry) so he could gain full acceptance to a local knothole gang. Named after the wooden planks which surrounded the old Braves Field in Boston (a National League team called Boston its home as well back in the day), the kids ("gangs") would stand and peer through the knotholes in the wooden planks which otherwise blocked their view. It was a privilege and an honor for my father to be so connected to the game this way. He grew up loving baseball, and as a parent, he passed his love of the game on to me – and my brother.
"I’m sitting in the rocking chair, good buddy," (a "Smokey and The Bandit" reference, if you’re not of a certain vintage), between two 18-wheelers where the police radar can’t find me – further referencing the C.B. radio days. Updating to the "Kenny-with-cancer" days, I’m a month or so past my last very encouraging CT Scan, the one I wrote about when my oncologist offered me a congratulatory handshake, a gesture he had not made in the five-plus years since we’ve been tangling with this damn disease; and I’m approximately seven weeks away from my next CT scan, "intervaled" every three months at present. Seven weeks is far enough away where I’m not even thinking about it, or the possibility of its discouraging results that I’ll know about on or about June 9th. I am cruising, emotionally, and savoring the excellent results from the last scan and not yet worrying, wondering, hoping, praying (too much) about my next scan. This means, at the moment – or moments, I should say, I am enjoying a relatively stress-free and blissful ignorance to what may – or hopefully may not, be happening in my lungs. I am, to quote a Three Stooges line: "as safe as in my mother’s arms."
So has said my longtime oncology nurse, Ron, who has tended to me since June, 2009. Originally, I had been assigned to a different oncology nurse, Holly, with whom I developed an immediate rapport. She cared for me from the beginning, early March 2009, when I began my every-three-week chemotherapy infusion through June, when she transferred from the Infusion Center to a different unit (oncology does take a toll). Initially, after Holly’s departure, Jane, another nurse in the unit, took me on as a patient. However, and this is where the details get sketchy, within a subsequent infusion or two, I was told one day upon my arrival at the Infusion Center, that Ron, still another oncology nurse, who I had certainly seen there previously but with whom I had minimal interaction, would be taking over for Jane – who was not transferring out – and henceforth would be my new oncology nurse. Apparently, I had been traded. For another patient? For future considerations? For a lunch-to-be-paid later? To this day, nearly five years later, I’ve never been able to uncover the truth. I got along fine with Jane; I’m a very low-maintenance patient/ person; I don’t think I did anything to precipitate such a decision. Nevertheless, a deal (my word) had been struck.
…my Certified Holistic Health Coach, Rebecca Nenner, that is. (Visit www.healthcoachdiva.com for information leading to a healthier lifestyle.) More than a coach, Rebecca is my friend – and has been for many years. A former co-worker at the Connection Newspapers, Rebecca is as passionate about health and fitness as I am about the Boston Red Sox. She has been my guiding hand now for over five years, most especially when I was first diagnosed with stage IV lung cancer back in February, 2009. Although there are no whistles involved in her coaching, there are phone calls, e-mails, YouTube videos, Webinars and miscellaneous other advisories regularly landing in my in box. To say Rebecca has saved my life might be an overstatement, given that I am being treated by an oncologist; however, she has given me an alternate perspective on what I can do to help my body survive my treatment and live like I have a present and a future, a gift if ever there was one.
I felt a bit of a dope this week when, after reading last week’s column, "Whew!", multiple friends called to inquire specifically as to the "Tony-the-Tiger Great" news I wrote that I received from my oncologist, and I couldn’t answer them in any detail: shrinkage, less fluid, "partial stable remission"? Nothing. And though I tried to get my oncologist to explain to me exactly what was so encouraging about this most recent CT Scan – compared to the one I took three months ago (as opposed to the one I had nine months ago which was mistakenly compared to this most recent scan and resulted in the "Some better, some worse. I’ll explain more on Friday" e-mail I received from my doctor and talked about in "Whew!") – I was rebuffed. Rebuffed in the best possible way: being told instead how great I was doing, how great my lab results were (for this most recent pre-chemotherapy) and how I could live a long time like this (presumably continuing to be infused with Alimta) – it was almost disconcerting; especially when you consider the original e-mail assessment we received and our less-than-positive interpretation of it. Moreover, the oncologist’s exuberance and smiling countenance, along with his offer of a congratulatory handshake led me away from the missing facts and immediately into these new-found feelings.
Originally, this column was to be a discussion about the communication process between my doctor and this patient. Specifically, the time lag between when tests are performed/completed and when those results are communicated to the doctor who in turn – per this patient’s request, e-mails them to me. In the olden days, results were most likely offered up in person; in the post-olden days, more likely a phone call was made; presently, at least in my experience, results most likely will be e-mailed. I imagine an enduring problem for the patient – during all three "days," has been the time waiting for test results and hearing about them from your doctor. Excruciating is one of the most accurate characterizations of that delay, combined with an unhealthy dose of helplessness. Eventually, if you live long enough, you sort of become accustomed to the process and learn to roll with the punches, both figuratively and literally. Nevertheless, the patience and experience you learn can’t totally stop the rampant speculation that keeps you up at night and sleepy during the day.
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.