January 6, 2012
Kenneth B. Lourie
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I wouldn’t say I have symptoms (why would I say that? If I said that, I’d have to admit that cancer is having an effect on me.
I realize money doesn’t buy happiness, although I wouldn’t mind renting it.
It always does, and there always are; especially if you have to work for a living and cancer is a part of that living.
You’ll note there’s no question mark after the “I.”
There’s no denying the emotional fact that the CT Scan results I received and wrote about last week were a bit of a disappointment.
But real-time once again: February 20, 11 hours, approximately, after our regularly-scheduled, post-scan meeting with the oncologist at 10:00 this morning.
I’m not a night owl. More of an early bird, worms notwithstanding. But given the contents of last week’s column, “Scantsy,” I find it difficult to write about anything else while waiting for the results of my CT Scan.
It’s becoming increasingly difficult to characterize the feelings I regularly experience during the final few weeks leading up to my every-three-month CT Scan, and even more so the feelings I experience waiting the following week or so to see my oncologist to discuss the results.
Presumably, maybe even obviously, nearly six years into a “terminal” diagnosis, arrangements for a smooth transition of power should have been made already.
If I were writing this column in Massachusetts – where I was born and mostly educated (K-12), and had a thick Boston accent, that’s how court would likely be pronounced; changing a noun into a verb.
Sneezy, Coughy, Phlegmy, Stuffy, Achy. No-Sleepy and Post-Nasal Drippy; and no Doc, which is possibly what led to this column being written.
For one box of 54 petite Belgian waffle cookies in three delicious flavors: milk chocolate, dark chocolate and vanilla; an extravagance to be sure, available during the holidays; this recipient (actually, my wife, Dina, was the recipient) very happy to oblige and indulge.
Thankfully (so far as I know, which isn’t very far), after a five-week interval between infusions, which included two additional weeks of pre-chemotherapy lab work and an out-of-the-ordinary 24-hour urine collection (“creatinine clearance”) to boot – to more accurately measure my kidney function in hopes of meeting a 1.6 threshold – muster was finally passed, and I was subsequently infused without any further adieu.
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.
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.
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.
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.
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.
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 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.
Recently, due to circumstances beyond my control, I was forced to buy a new car (in this instance, “new” means different, not a current model year). Estimated repairs at 137,000 miles that could have escalated into the unknown – and unaffordable – thousands compelled me to fish so I wouldn’t have my bait cut (and I don’t even like to fish).
I realize this admission may sound weird, but having cancer is boring. Don’t get me wrong, I’m lucky to be alive, and quite happy about it, too. But waiting for the other shoe to drop, i.e. some bad cancer news to appear (lab work, scan, advisory from my oncologist), is tiresome because it’s always so worrisome.
I last celebrated my father’s day six years ago, in 2006. Six months later, in early December, he finally succumbed to that which had been ailing him: old age for sure, the effects of two strokes for certain and the realization that it was, as we like to say in our family: “Enough already.”
I’m not going to beat myself up too badly; after all, I do have terminal cancer. However, I am disappointed in my behavior of late, especially as it relates to my status as a still-active (thank God!) cancer patient/survivor undergoing treatment.
If only it were that simple. And as much I’d like to turn the cancer switch off, finding that switch has proven to be extremely challenging.
Though my column has appeared in the newspaper as usual the last few weeks, I haven’t felt much like writing. Typically, I’m weeks ahead with my column inventory, having regularly found the time and inclination to put pen to paper and provide the prose you regular readers have come to expect.
Whatever I thought was only happening in my head – or not, or was really happening physically – or not, is the muddled description of the thoughts and emotions that this cancer survivor/cancer patient-still-receiving-treatment feels every time I make a 24/7 self assessment (which is often).
Mostly. All things considered, and as a stage IV (terminal) lung cancer patient, it’s impossible – for me, to not consider all things.
As our Publisher and fellow cancer survivor, Mary Kimm, e-mailed back to me last week: “Who knew ‘stable’ could be so exciting?”
Having recently upgraded my cell phone, I have finally, due to its larger keys and simplified data-entry process, learned how to enter “contacts” and their phone numbers as well as select some of these key contacts for speed-dialing.
As a veteran of the chemo wars, I should have been better prepared mentally for the food/taste challenges often caused by the infusion of such cancer-fighting chemicals, but I wasn’t.
A male patient sitting directly across from me being infused with his unique chemotherapy cocktail, a bit too far for a conversation, but certainly close enough for a knowing/empathetic glance.
So here I go again; heavy-duty chemotherapy for the first time in nearly three years. As such, I thought I’d try and write another column while actually sitting in the Barcalounger at The Infusion Center (as I did three years ago: “Chemo-Cocktailing at the Depot” was that column’s title) and see what my pen has to say.
In the last few months, out of the blue, I have received electronic correspondence from each of my three oldest childhood friends (none of whom have remained adulthood friends, though all three remain of interest to me) commenting on my cancer diagnosis; each having stumbled across one of my cancer columns online, presumably after initiating a Google-type search for yours truly.
The Beatles sang it on their “Revolver” album back in the mid 60s. My wife and I danced to it in the late 70s when we selected it as “first song as husband and wife” – in 1978. And recently we felt it, three years after my stage IV lung cancer diagnosis, as our reaction/assessment to the many similarly diagnosed individuals who’ve shared their lung cancer stories with us. Who knew?
There’s five words e-mailed from my oncologist that I can live with (Duh!). Certainly better than the previous nine words e-mailed eight weeks ago regarding my then current CT Scan: “Scan results show progression. We’ll talk more on Friday.”
Well there’s five seconds that fellow super-market-shopper won’t have back anytime soon. The question, the curiosity is: will she have nightmares and/or live to regret staring at me so intently that I think I may have seen the whites of her eyes – and it wasn’t even remotely dark?
I suppose, as a cancer patient, there’s a presumption/understanding that not giving into cancer and its potential ravages is an ongoing battle – to the death, if you will. And I imagine, on many levels, some truer than others, it is. War is indeed waged – so to speak, in hopes of defeating this horrible disease (enemy).
As much as I don’t want to be ever-mindful of today’s date – relative to when I first learned of my diagnosis, that Thursday three years ago this very week, when my Internal Medicine doctor called me with the results of the biopsy (confirming the malignancy); and of course all that had preceded it and all that has happened since.
But not sickness. Not health, either, as last week’s column ended. At least that’s the way I characterize my having stage IV lung cancer. And I don’t know if I’m splitting hairs here, since I’ve never worked in a salon, although I do get my hair cut regularly; but I have been accused of speaking double-talk.
The chemotherapy juice, that is. Going forward now, every three weeks until I’ve completed six infusions, finishing sometime around mid May barring any foreseen – and previously experienced blips (meaning delays): levels, counts, readings, etc., that would compel my oncologist to stop åhe treatment and await results of a retest
There’s a word – in a medical context, anyway, that you don’t hear every day. And if you’re a stage IV lung cancer survivor – like me, 35 months post-diagnosis, it’s hardly the word you ever want to hear – or see – describing the most recent CT Scan of your lungs (Mediastinum) where your malignant tumors have been in "partial stable remission" going on two-plus years now. "Progression" means growth. Growth means the relative calm under which you’ve existed for the last few years is officially over.
The meaning being: the anxiety one feels waiting for, and awaiting the results of, a diagnostic scan.