Two Much

Having just been there and done that, I have to tell you, it was a gruesome week. Although I’m fine now (I know, it’s a relative description), this past week, I was not. And what specifically I am referring to is, the odd confluence of two recurring elements of my cancer existence: a CT Scan and a chemotherapy infusion. Not at the same time, of course, but at the same place and for the same reason: being an active cancer patient.

The CT Scan (scheduled quarterly), though not a difficult, invasive or time-consuming procedure doesn’t generally result in an immediate interpretation/assessment from my oncologist/their radiologist. Quite the contrary. Typically, I wait up to a week for results (as I’ve occasionally written about in the past). Certainly not ideal, but over time (seven-plus years) and hill and dale, I’ve been able to assimilate the wait into my life and go on about my business, semi normally; it’s been more difficult for my wife, Dina, however, to do so. Nevertheless, with respect to the CT then, the waiting is the hardest part. Its all psychological/emotional. There are no physical side effects, the side effects are all mental: fear, loathing, anxiety, stress, among many similarly impactful affects. It’s not all bad, but it is all consuming. I’m really only ever sure how I’m doing cancer-wise, when I receive my results, since rarely have I been symptomatic.

On the other hand, the chemotherapy infusion, which presently alternates/occurs every four/five weeks, does not – for me, generally, have any psychological/emotional side effects. It is what it is, and whatever it was or will be, I’m way past having any anxiety or stress about the process or the reasons for it. However, there are/I do experience physical side effects (which unfortunately do weaken my emotional resolve): fatigue, lethargy and most significantly, eating challenges which keep me from eating “normally” for up to a week. This lack of food/comfort, results in a lack of energy, lack of interest/motivation, messed up sleeping pattern and a fragile emotional state. I derive no pleasure from eating and my overall mood reflects that very necessary element – for me. As a result, I’m miserable.

In and of themselves, this post-CT-Scan-waiting and post-chemotherapy-infusion-not-eating are difficult, but manageable. However, having them occur during the same week – which had never happened before, was not exactly like being between a rock and a hard place but rather like being under a rock and in a hard place. Not only was there a wait and a weight, there was the inescapability of it to consider. I had no place to go emotionally/psychologically. Aside from there being no rest for this weary stage IV lung cancer patient, there was no respite or reprieve, either. I couldn’t stop myself from going down, so down I went.

And there was nothing I could do to stop it, although there was everything still needing to be started. But all I could do was sit tight (literally), and sure enough, as is the pattern, about six or so days later on the Thursday afternoon following the preceding Friday infusion and the Wednesday CT Scan, I received an email from oncologist with the news” “CT looked good. Brain MRI clear.” “Great news,” as I replied, “with which I can live.” Coinciding as well as it usually does, with the eating fog beginning to lift and the transitioning from not eating to eating a bit to eating normally beginning to occur.

It was a bad week to be sure. Not only was I whipsawed, I was undercut, too. I had nothing to hang onto, not even my hat. I just had to endure and try to remind myself what my Auntie Irene so often said: “This too shall pass.” And as of Saturday night at 1:53 am, as I sit and write this column, it mostly has. Thank God!

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Two Things I Worry About

For the sake of this column, anyway: should I be hospitalized for more than a passing fancy, how will I be able to maintain my non-Western (50-plus pills, Braggs Apple Cider vinegar, wheat grass, Essential Oil, etc.) alternatives/daily regimen away from home? And secondly, should I be so hospitalized that it makes returning to work WHERE I CO-PAY MY HEALTH INSURANCE PREMIUMS impractical and quite unimaginable — under the presumptive-circumstances-possibly-to-be, said insurance is unlikely to continue/be co-paid for too long, even though I work for an incredibly kind and understanding company, how do I transition to nonwork/working-dependent health insurance?

I suppose “Obamacare” is likely the answer but could I afford (since I’d no longer be making my previous income) the premiums which would be higher than my present co-paid premium? If the answer is indeed “Obamacare,” is its “openness” seasonal? At certain times? Requiring special circumstances? What if I am accepted but have to change insurers after nearly eight extremely successful (which I define as yours truly still being alive) years and begin anew with who knows what, where and how about me, myself and I? If part of surviving cancer is managing stress, I don’t see how that management — so to speak, continues after such a drastic change in my health care/lifestyle?

As for my pills/ “Rebecca routine,” what will give (to re-work an old expression) when hospitalized? Based on my previous one-week stay in August 2013, nothing will be given — or asked about. I’m not sure if it wasn’t asked about or integrated into my treatment as a matter of hospital policy or simply a reflection of poor planning/non-advocacy on our part? Either way, I stopped taking my pills/doing my things, things that quite frankly have likely contributed to my amazing good fortune to still be alive so many more years longer than my original “13-month to two-year” prognosis suggested I’d be. And how do you think the added stress of not maintaining another routine that’s been an integral part of my life going on for nearly eight years post diagnosis would affect my stay/stress should I be forced to extend my time at the hospital?

Perhaps I sound naive in worrying about pills and policies, especially considering that at the moment (although I am currently waiting for CT Scan and brain MRI results from two days ago and have chemotherapy scheduled in two hours), neither scenario is imminent. But that’s exactly the concern. If I wait until it’s imminent, it might be “too late,” as Tommy Heinsohn, aka “Tommy Gun” during his playing days, used to exclaim after made baskets by the Boston Celtics, while doing television broadcasts for them back in the day, starting in the mid-1960s. And the other scenario: one is not exactly forewarned when ‘imminent’ is; it sort of happens, right? All one can do I think, is anticipate and possibly/dare I say inevitably, investigate and plan accordingly — without being too morbid or morose in the process. Because once I lose my sunny disposition and positive attitude/sense of humor, it’s likely that all bets: win, place or show — and presumptions, are off. “Not a sermon, just a thought,” to invoke/quote Lon Solomon from McLean Bible Church as heard on local radio here in Washington, D.C.

Because who knows what matters, really? I certainly don’t. I only know is what I don’t know. And what I don’t know is, will any of the likely future changes I’ve discussed — to quote Curly Howard from the Three Stooges’ episode “Some More of Samoa”): “kill or cure.”

In The Context Of …

Having cancer; not that you need to know how I think but, if you’re at all curious as to how a diagnosed as “terminal” stage IV, non-small cell lung cancer patient thinks, even now, nearly eight years out, read on.

As much as I don’t want to think about what I’m doing and why – and just live life as it comes/happens, a “13-month to two-year” prognosis (originally received on February 27, 2009; oh yeah, certain dates are seared into your memory), I can’t. It’s not necessarily a lifestyle change that occurs when you’re diagnosed, it’s more the psychological and emotional hold and affect the diagnosis causes. It permeates and subconsciously – or so it seems, infiltrates your brain and changes the way you think and feel. It’s not that you become unrecognizable to friends and family, but you definitely become a victim of your circumstances. It’s as if your brain is rewired somehow and you’ve reached your outer limits where you’ve lost more than the control of your television set.

To the point/example of what I’m referring to (finally) which precipitated this semi self indulgence: my car and certain repairs, expenses and warning lights which have illuminated, warranting attention after months of neglect. Specifically the car to which I refer is our “second” car, the one we don’t rely on for non-local trips: a model year 2000, Honda Accord sedan inherited from my widowed mother in December, 2008 – with only 35,000 miles on the odometer. The classic example of a retired person’s car with incredibly little wear and tear and extraordinarily low mileage given its put-in-service date: sometime in the year 2000.

As I said, it’s not our primary car, but it does get driven regularly given the potential mileage restraints of our ‘primary’ car’s lease. Currently, the Honda has 94,000 miles on it. It’s been a good and reliable car which has needed few repairs – other than those to-be-expected, the costs of which have generally fallen with the “usual and customary” range. The car still rides well and overall suits my requirements for a ‘second” car: it gets me from point “A” to point “B” – and most importantly, back, and it has no monthly car payment. However, there are a couple of inconveniences/concerns which if left alone are not likely deal-breakers but, the expense of fixing them – on a car that is nearly 17 years old, might be.

And the deal which might be broken has to do with yours truly having lung cancer and a somewhat different life expectancy now at age 62 (verses the one I thought I would have when I initially took possession of my parent’s car in 2008 – at age 54 and two months, or the one I thought I had a mere two and half months later – just before I was initially diagnosed). Ergo my dilemma is: do I want to spend major money now (for me/us) on repairs whose maximum benefit will not occur until next spring – six months or so, at the earliest, but if tended to now might limit the potential damage/cost later or shall I just wait for divine intervention, so to speak? (The repairs have to do with air conditioning that doesn’t cool in the summer, a window – on the passenger side which does not open all year round, and brake lights and the seat-belt restraining system – “SRS,” safety issues which this idiot is being warned about.)

Not unsolvable problems, presumably, unless you have a terminal form of cancer. Considering that reality, don’t I want to live more in the present and not worry about a future, a future which is hardly guaranteed? Moreover, shouldn’t I damn the torpedoes and live full speed ahead and let the chips: lab work, scan results, car repairs, etc., fall where they may; finding some normalcy/solace in pretending/deluding myself into thinking that all is right in my world? To be determined. Still, I know/feel one thing: if I live like I’m dying, I probably will.

A Site To Be Told

I have a web site: http://www.kennywithcancer.com. Original, I know. But now what do I do with it? I mean, other than feeding my ego (a little bit) and providing a more central/accessible location for my nearly 350 cancer columns (published every week since June ‘09) — and the occasional non-cancer and/or sports-themed column, what is the point of it, really?

I can’t really say it’s to bring awareness to the cause of this non-celeb because I know very little, even now, nearly eight years post diagnosis. And reading what I write is hardly news or noteworthy. Oh sure, the columns are mildly amusing and moderately informative, but compared to what exactly? Nor do I provide resources for other cancer patients, families or interested parties to educate themselves about this dreaded disease. I offer few facts, few figures, few recommendations, but lots of feelings. I only know what I don’t know which, given its rather ample supply, has enabled me to maintain this seven-plus years output of weekly columns, having never missed a deadline during the entirety of my treatment, even during the early days of heavy-duty chemotherapy when occasionally I was down, but not quite out.

I suppose my columns do chronicle a cancer-patient’s journey, so to speak, in real time; hopefully not in a boring, self-indulgent tone that turned some of you readers off. Perhaps there was still some meat left on the bone that offered some observations and emotions that drew you in and better acquainted you with the trials, travails and tribulations of a characterized-as-”terminal” stage IV, non-small cell lung cancer “diagnossee.”

Writing about that diagnosis and my life as a cancer patient has come naturally to me. It has enabled me to share, which in a way, has lessened the burden on me, almost as if we were all in this together (strength in numbers and all of that). And I suppose that’s sort of true since I’ve involved you regular readers in so many intimate details. I’ve held nothing back: the good, the bad and the ugly; no, not the movie. As a result, I imagine, I have received correspondence encouraging and commending. I assure you, none of it has fallen on deaf ears. And to be honest, I’ve not written about my having cancer for the greater good; I’ve not written about it to make friends and influence people, nor have I written about it to affect any policy change. I’ve simply written about because it has made me happy to do so.

And what little anecdotal agreement exists in the cancer-patient/treatment world, it is that happiness, laughter, positivity, etc., helps patients in ways that medicine in and of itself seems not always capable of doing. Unfortunately it appears not to be something which can be prescribed — in pill or liquid form, but something nonetheless that needs to be discussed and behavior-modified to attain, especially if it seems not be happening by itself. I’m living proof of that. Rather, I hope my columns are living proof of that. In my posted-columns-to-be, if there is a joke or funny popular culture reference in my column, we will link it to the original, if available in the public domain so visitors can see exactly what I’m saying. I want my site to be more than just for sore eyes, but a sight to see as well; living and breathing, just like me.