Time To Plan Ahead

In consideration of the future, I have to plan in the present. Random and/or spontaneous actions/commitments are allowed, even encouraged, but given the recurring nature of chemotherapy infusions and the week-long side effects that follow, are not very practical.

As an example: Thanksgiving, Nov. 24 and Christmas Eve/Christmas Day, Dec. 24⁄25. According to my ‘present’ infusion schedule: four weeks, then five weeks, then four weeks, etc., barring semi-foreseen abnormal lab work results, which I will only find out the Thursday immediately preceding the Friday infusion, my next treatment will occur on Friday, Oct. 14. In and of itself, not a problem, other than the usual — with which I am, and perhaps you regular readers, too, are familiar. However, five weeks later my infusion occurs on Friday, Nov. 18 meaning I’ll be miserable, not-eating-wise the following Thursday, Thanksgiving (which if I had my druthers, I’d rather not be). Now should I pretend that’s not a problem for me? No. Following that potential holiday impact, my next alternating scheduled infusion occurs four weeks hence on Friday, Dec. 16, the week/Friday before Christmas Eve/ Christmas. Now if these holidays didn’t involve travelling, eating and socializing, and generally trying to be on my best behavior, maybe I could manage. Unfortunately, nothing could be further from the reality.

Presuming/pretending that this schedule is not a problem is naive at best and extremely poor planning at worst. So what are my options? Well, I could always stop my chemotherapy infusions entirely until January, a “quality of life” alternative my oncologist has regularly encouraged. However, given the severity of my diagnosis/prognosis, I have always felt uncomfortable stopping treatment and as such, have never taken a break/brake. (Now, either I’m still alive because of it, or in spite of.)

Perhaps the solution is simply to reschedule my infusion intervals and still get treatment while manipulating my side effects/circumstances? If I reschedule my November infusion to occur four weeks after my October infusion (instead of five weeks), the date of that infusion would be Friday, Nov. 11, allowing more than enough time, nearly two weeks, to recover before Thanksgiving. However, switching my previous/original four-week interval to five weeks causes that December infusion to occur on Friday, December 23; not good timing at all. Worse in fact than my current schedule. But if I don’t alternate intervals and repeat that four-week infusion schedule (unfortunately losing a “quality of life” week in the process, a process that was intended to increase my “quality of life” weeks), then my December infusion would occur on Friday, Dec. 9, two weeks out from Christmas; perfect timing to allow for a semi-normal fortnight.

The net result is peace and relative quite. And by that I mean, other than advancing and increasing the number weeks when I’ll feel miserable (and won’t be eating), I won’t feel miserable for two of the most significant, positive-reinforcing, feel-good weeks of the year. And if there’s one, two or three things a cancer patient/survivor can’t get enough of, it’s days when you’re not in a daze and weeks when you’re not feeling weak. And after writing this column, and perhaps righting this ship, I feel pretty good about the next few months. It might not be ideal, but ‘ideal’ left the building a long time ago, on Feb. 27, 2009, the date of my original diagnosis.

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Banking On The Envelopes

Now that you know my pill plan, after reading last week’s column; there should be no stopping me, right? Starting me however, is still a problem. Having removed a major impediment (transporting/segregating my pills), one would think I could finally get out of my own way. Unfortunately, it’s not that simple — for me. Sometimes, finding that ‘way’ is equally challenging. I might know the how, and maybe even the why, but the what and the where often remains frequently a block over which I stumble and stammer.

Nevertheless, having allocated my pills accordingly does allow me to think less about the present and more about the future. And planning for one’s future, especially when that ‘one’ is yours truly, a previously diagnosed as “terminal,” non-small cell lung cancer patient, stage IV, whose future was not necessarily foreseen, is more than just a leap of faith. In fact, it’s the stuff of which dreams are often conjured.

What I was given — not promised, was made clear to me in late February 2009 by my oncologist when he advised me that my prognosis was “13 months to two years.” And as much as one (this one) wanted to think about the future/even having a future, I felt it was the present I had to account for first. And though it certainly was a present imperfect and tense a great deal of the time, over hill and over dale and continuing/supplementing my standard chemotherapy treatment/regimen with a variety of nonWestern alternatives, I have managed to overcome my ‘present’ focus and begin to consider a future well beyond my original prognosis.

As the years have indeed passed, I have begun to believe in the power of the present surely, but mostly in how it might provide a foundation for a future; providing a “nutty and bolty” approach as to how I can navigate this mind/mine field (literally and figuratively) of outrageous misfortune and find a path of least resistance. As much as I want to get from here to there, I suppose I’ve needed a framework of sorts, a routine that would enable me to think without consulting the manual, so to speak. A manual which offers few guarantees and less-than-encouraging mortality tables, however much improved they are over previously diagnosed generations of lung cancer patients (although still the leading cause of cancer deaths and new diagnosis yearly in this country).

Given these realities, I am well aware — and extremely grateful for my survival. Has it been random luck? Good DNA? A bit of a misdiagnosis? An open mind to the potential benefits of lifestyle changes, diet, occasional exercise and non-Western approaches to treating cancer/boosting one’s immune system? Certainly I don’t know — and don’t care, quite frankly. All I know is what I’ve been told: whatever I’m doing, keep doing it, which seems perfectly logical and manageable for me (“if it ain’t broke …”).

If I were to consider, for a minute what has pulled forward to the future/present rather than backwards into the abyss, I think it would be hope. Not simply hope that what I was doing would work/extend my life, but more so that it gave me something to think positively about. And I’m not even sure that is an accurate distinction. All I know is that “bank-enveloping” my pills has given me one less thing to fuss about concerning my diagnosis and allows me, potentially, to live my cancer-affected life as normally (pre-cancer diagnosis), as possible. At least, I hope so.

Shore About One Thing

“Want to get away?” No. Not usually. I’m more of a home body than I am an awayfrom-home-body. But occasionally, even I have the urge to get up and go. And now that I’ve come up with a system to safely transport the 50 pills-plus I ingest daily, I feel less constrained by my previous limitations (how does one pack up/plan for travelling with 20-plus bottles of pills worth an estimated $200? In a car? OKAY. But on a plane? If I do carry them on, are that many bottles/type of content even allowed? Do I carry on a day’s worth and pack the rest? Would a note from my oncologist help? If I checked my luggage instead, what if the luggage get’s lost?). So I’m now using bank envelopes (the kind used by the drivethrough tellers) to segregate my a.m. and p.m. pills. As James Whitmore (as Brooks) in “Shawshank Redemption” said to Andy Dufresne (Tim Robbins) about distributing the library books to the inmates: “Easy peasy. Japaneasy.” In effect, no fuss, no muss. As a result, I feel as if I’ve regained some control over my life (always a good thing for a cancer patient).

Ergo, I am now sitting poolside in New Jersey at my wife, Dina’s, cousin’s beach house. My pills are “enveloped” in our bedroom, my alkaline water (another transportation problem which I have not yet solved) is “galloned” in the fridge and my usual and customary anxiety is back home in Maryland. And if there’s one thing a cancer patient undergoing chemotherapy needs, it’s relief, maybe even relocation from all that is usual and customary. Not that you ever forget — for one second, your diagnosis/original prognosis/abbreviated life expectancy, but it “sure beats Bermuda off season” as the old adage rationalizes.

So, even though I’m not exactly fat and happy, neither am I skinny and miserable. And for a cancer patient originally characterized as “terminal” (by my oncologist), not being ‘skinny and miserable’ is all it’s cracked up to be and I mean that sincerely and serenely. And though I’m not yelling “Serenity Now” at the top of my lungs to reduce stress as Frank Costanza was advised to do and did, on a long-ago Seinfeld episode, I am feeling “unencumbered” (to quote one of my father’s favorite words) and can’t help wondering: what took me so long?

But I know what took me so long. Me, myself and I; that’s who, and my commitment to maintaining my pill regimen/consumption — for fear of upsetting my emotional apple cart. Other than the regular/recurring infusions I’ve experienced over the past seven-plus years, the second most constant anti-cancer routine I’ve embraced has been my non-prescription supplements (most recently adding Chinese wormwood and Indian ashwagandha, while dropping N-Acetyl-L-Cysteine). For all I know, my unexpected survival has had as much to do with my pills as it has had to do with my chemotherapy? Finding a way after all these years to maintain this status quo might hopefully/presumably allow me to live longer and prosper and perhaps enhance my life, maybe even extend it. Besides, “I’m too young to die. Too handsome. Well, too young, anyway.”

I realize I may be making a mountain out of a mole hill here. Nevertheless, when the adversary is cancer, specifically a heretofore incurable form of cancer: non-small cell lung cancer, stage IV, any port in this storm is much appreciated. For the moment it seems, finally, I am ready, willing and able to continue the fight away from home – should the opportunity present itself.

Hardly Where

If there’s one place where I don’t belong, one place where I have limited knowledge, one place where I have minimal interest; it’s a hardware store. Complicating those incontrovertible facts are the size and scope of the modern-day, box store-type monstrosity familiar even to me. I realize/have been told that size doesn’t matter; apparently, that message hasn’t translated to the hardware store. The height of the ceilings, the width of the aisles, the depth of the shelves, the numbers of registers, the miscellaneous service counters, the automated/sliding entry doors, the pick-up areas, the shopping carts, the “vested” staff, the interactive displays and the sheer variety of everything are totally overwhelming to me (I’m being kind to myself; now I’ll be honest: intimidating to me).

The chance of me walking out with the item necessary to solve the problem I came in to address is almost impossible to calculate. However, if I were to try, I’d guess, somewhere between zero and none. And what chance I might have would likely require talking with “an associate” and being able to accurately describe the problem and the presumptive solution. That sounds simple and reasonable enough unless you’re me. I likely wouldn’t know the right answer if I heard it because either I had asked the wrong question or characterized the wrong set of circumstances which precipitated my visit in the first place. Moreover, knowing the eventual outcome will entail yours truly returning to the store and exchanging the item or spending hours at home on a repair that a “normal”/capable man/homeowner would spend minutes on, makes the entire process as unpleasant as any I’ve undertaken. Yesterday was just such a day.

I wouldn’t say I’m still recovering from the effort, but neither am I basking in the glow of a job well done. Now I’m not going to humiliate myself and tell you what the attempted repair was; you can be sure it wasn’t plumbing or electrical and certainly didn’t involve a toilet or a trap of any kind. Nevertheless, when you’re a person of extremely limited ability, instincts and experience as I am, any home repair in which you walk away uninjured and without any further adieu (follow-up service call from a professional or need for a new /replacement item because you broke the first one or made the problem worse by breaking something else) is a “Mt.-Rushmorian” success. Certainly not worthy of a mention in a magazine, but worthy I thought, of a column.

Now don’t get any ideas that yesterday’s success (‘success’ in this context is defined as ‘not a disaster’) emboldens me with any sort of self-confidence about future endeavors. Hardly. The fewer and farther between they remain, the happier I’ll be. Yesterday’s experience was nothing short of a miracle and simply moves me closer to the inevitable calamity I will cause when next I am faced with a similar set of homeowner-type circumstances.

For me, the devil is not in the details, it’s in the “do-tells.” The problem begins with the problem. It is then compounded by my inability to communicate the problem at the store, it is then compounded by my inability to understand the solution to the problem I am given at the store and finally, the problem is compounded by my inability to do at home what I was told at the store.

Believe it or not, I can accept my level of incompetence; I’m used to it. It’s much harder on my wife, Dina, though; she has to live with me.