Context of Having Written

I don’t want to self-indulge too much about last week’s column but, sometimes in my unexpressed desire to fulfill my writing obligation/not let me cancer/cancer treatment affect my schedule, I write my column under less-than-ideal circumstances. Post chemotherapy/(last week) – the immediate week after, is about as challenging as it gets for me. I’m a bit irritable. I’m a bit out of sync/unable to focus. I’m somewhat impatient. My hands are shaky. My eyes are “squinty.” I’m hungry yet I can’t eat. My self-editing skills are below average – more than usual. And finally, my reading comprehension is mostly lost in the toxic haze. Still, I’m determined to make my deadline.

Not that any of the preceding paragraph is an excuse. It’s more of an explanation as to why a column written with the best of intentions may have missed the mark in tone and substance. Though I’ve not received any feedback as yet confirming my sense of what I had written last week; nevertheless, my feeling upon submitting it to editorial was that I had wavered a bit. Unfortunately, I didn’t have the balance emotionally or the ability physically to assess its content. I apologize in arrears for attempting to maintain its regularity.

And to that point, specifically to that word, that’s what my attitude as a cancer patient has been about: regularity. Doing the things that I regularly/normally/typically do without deviating from my norm. Because for me, deviating from my norm, living/doing outside of my box – within reason, would be – to me anyway, reinforcing the negative that is most definitely a cancer diagnosis. A diagnosis with which I have long ago made my peace, made my choices and moreover, made my it goal to face the present/future with a positive attitude infused with as much self-effacing good humor as possible. It’s nothing I really did intentionally, it is simply who I am: my father’s son, with inherited sensibilities to live my life thinking the glass is half full, until it’s not.

And so far, nearly nine years into a “13 month to two-year” prognosis, I’m living proof that either whatever I’m doing is working (and there’s a bit more to the story) or I’m an incredibly lucky act of kindness for which there’s no quantifiable explanation. Regardless, I’m not the least bit inclined to look a gift horse in the mouth and/or deny the possibility that my tumors are necrotic (dead). I’m very happy to accept the inexplicable fact that, statistically speaking, I’m an official anomaly: a stage IV, non-small cell lung cancer survivor.

However, since I’m not one to presume facts not yet in evidence, I’m still infused every six weeks, scanned quarterly and seen by my oncologist every three months. I don’t for a second believe that somehow, after being diagnosed with a “terminal disease” in late Feb., 2009, that life goes merrily along without consequences. Not that I’m a fatalist – Rebecca, I’m merely evaluating/introspecting/compartmentalizing and allocating precious emotional resources so I can live my life as I’m accustomed to doing.

And what I’m most accustomed to doing, especially dating back to Dec., 1997, is writing a weekly column for Connection Newspapers. Though the columns published previous to June ’09 were not “cancer” columns, as we call them, they were nonetheless written with the same passion and nonsensical prose as my “cancer” columns are. So, generally speaking, I am able, as my brother Richard says, “to churn out the dribble.”

Still, writing is not like reading. Though a similar commitment is needed, writing requires a bit more effort. And it’s been an effort I’ve sustained before, after and during my lung cancer diagnosis. Some weeks are harder than others. Last week was difficult. This week not so much. Perhaps you agree?

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Giving Thanks for the Going

Four hours up north with moderate hassle first thing Thanksgiving-Thursday morning. Dinner and all the fixings with family and friends upon arrival, after a midday break. Conversations and such with young, medium and old (with yours truly being the oldest of our generation) until 1:15 am, (a recent time record for many). Up at 7:30 am for breakfast with more casual talk and noshing. Out the door at 9:15ish heading back for an immediate day-after return trip home scheduled to make an early Friday afternoon chemotherapy infusion. Infusion completed and on the final way home, a stop at the supermarket at 4 pm – since we had no Thanksgiving leftovers (turkey sandwiches in particular) to satiate the deprived. Dinner as soon as possible since we were both hungry and tired after our up-and-back. Turkey breast, mashed potatoes and peas for our own leftovers, off-and-on television and napping and then we both called it at 9:15 pm or so.

Twelve hours later, we were both awake. What a sleep! What a 24 hours! What a wonderful holiday! I wouldn’t characterize it as an ordeal. However, it was a bit of an undertaking given my Friday afternoon commitment; my first-ever, post-holiday, having-to-rush-back-from-out-of-town excursion. Though in previous years, we may have occasionally traveled up and back in the same day, when our route was two-hours to Pennsylvania where the in-laws lived, we are older and presumably wiser now and somewhat less able and inclined to travel with as little margin and rest. Compounded of course with Kenny-with-cancer being mostly behind the wheel, a permanent designated driver since I don’t drink and still see pretty well at night. Still, I’m hardly the driver I used to be and the affect of the holiday festivities on my fellow drivers is always cause for concern.

But all’s well that ends well, except for the piles of Thanksgiving day-afters  left where we last saw them, miles away. Nevertheless, we are happy to have made the effort, despite the less-than-ideal timing, As difficult as this kind of schedule was/had to be, I can’t let, as much as possible anyway, my cancer stuff: infusions, 24-hour urine collection, pre-chemotherapy lab work, quarterly scans and yearly MRIs and quarterly appointments with my oncologist impact my semi normal life. In fact, my oncologist has been a major proponent of my “quality of life, an advisory he has regularly encouraged.

I’ve always felt, from the beginning of my diagnosis/prognosis, that I was not going to live my life any differently than I had previous to 2/27/09. As challenging as that proved to be on many occasions, my goal has been to try and integrate my life around my chemotherapy – and vice versa, and to not let too many chips fall along the wayside. Moreover, my philosophy has been not to bucket a list either, but rather to simply live my usual and customary life and not be affected by my “13-month to two-year prognosis.” If I was doing bucket list-type things, things that I would ordinarily not be doing, I felt that would be reinforcing a negative: that I was going to die prematurely, rather than encouraging a positive: that I am going to live. For me, maintaining the status quo and continuing to do the little things that characterize who I am and what I value seemed more appropriate and more Kenny-like. Not sharing Thanksgiving dinner with relatives with whom I’ve shared a table going on nearly 40 years wouldn’t have helped at all. Not now, or ever.

Finding balance – and sanity in the midst of a battle royal – vs a “terminal” diagnosis, stage IV, non-small cell lung cancer, is all it’s cracked up to be. A little fun, make that a lot of fun, never hurt anyone, especially those of us fighting for our lives.

Welcome to the Club

“Some club,” as my late mother would likely scoff. And the club to which I refer is, to spin an old Groucho Marx joke: a club you’d rather not join especially if they’d have you as a member. This is of course, the cancer club, a club whose membership continues to grow despite worldwide efforts to the contrary. According to Medscope.com, one in two men and one in three women will be affected by cancer in their lifetime. Hardly a statistic to be ignored. And so, even though I had a rather uneventful/healthy upbringing and further on into adulthood, in late middle age, 54 and five months, Feb. 27, 2009, I was impacted and rudely awakened with a non-small cell lung cancer, stage IV diagnosis – out of the blue, and given a “13 month to two-year” prognosis to boot. As a life long non-smoker with no immediate family history of cancer, whose parents both lived well into their 80s, I was more inclined to worry about the Boston Red Sox pitching depth than I was about cancer.

But cancer, for the past nearly nine years has been my life and amazingly, so far anyway, not the cause of my premature death (what death isn’t ‘premature?). And what brightens my day and lifts my spirits more than anything else (other than a Red Sox World Series Championship) is when I meet a newly-diagnosed lung cancer patient who exhibits the can/will do positive-type attitude necessary to endure the inevitable ups and downs to follow. To be selfish, it empowers me and strengthens my own resolve to live life to the fullest (it’s not as simple as saying it) and damn the torpedoes.

Within the last few months, I have met, over the phone, two such individuals. The first man, Lee, I met before he even had his first infusion. The second man, Mark, a bit more experienced, I met a year and a half after his first infusion. Each man was engaging, outgoing, confident, enthusiastic and quite frankly, happy to make my acquaintance. You see, after being given a less-than-desirable prognosis, it’s helpful to meet someone who, despite having received a similar diagnosis, has nevertheless managed to live almost nine years post diagnosis. (If he can do it, I can do it kind of feeling.) As for me, the nearly nine-year survivor, meeting cancer patients who are at the beginning of their respective cancer journeys, helps me to reconnect with my routes, so to speak, and share and share alike some memorable experiences, both cancer-related and not. In a way, we get to live vicariously through one another which for me reinforces how lucky I’ve been to survive for as long as I have.

And not that I need reminding, but it’s easy to take for granted one’s good fortune and forget – occasionally, the seriousness of my situation and the cloud that hangs over my head. The sword of Damocles has got nothing on me, literally or figuratively. Living with cancer is akin to nothing really. The chance that you’ll survive beyond your prognosis, maybe even have your tumors shrink, or see your scans show “no evidence of disease,” creates a kind of tease that cause your emotions to run the gamut. The possibility of living after being told you’re dying – and vice versa, perhaps more than once, over your abbreviated – or not, life expectancy, is simply too much to handle/absorb sometimes. It’s a roller coaster for sure, but one that rarely comes to a complete stop and never allows you to get off. Moreover, it’s not multiple rides, it’s one long, endless ride with no guarantees about what happens next – or where it even happens.

Meeting people who are ready, willing and able to confront their cancer future is just as important and stimulating as meeting someone like me who hasn’t succumbed to this terrible disease. It’s a win-win situation. Particularly significant when at date of diagnosis, it appeared to be a lose-lose. I’m proud to be a member of the cancer club, especially so when I meet people like Lee and Mark.

Not About Me, Mostly

Recently, as in a few weeks ago, Mindy, who none of you regular readers know, died of lung cancer. She was my decade’s long best friend’s wife. And she was my friend too, going back almost 40 years. Married to my oldest friend (starting in 10th grade), Cary, for over 35 years, Mindy was originally classified as stage I five years ago. Cary didn’t tell me for a year or so after because he didn’t want to burden me with another piece of bad news, and Mindy being diagnosed with lung cancer would most definitely have been bad news. She had a lobectomy (part of the lung is surgically removed), back then and that’s pretty much all I know about the beginning stages. After the surgery however, she was told she was cancer free.

Unfortunately, I wasn’t able to attend Mindy’s funeral. I had my own post-scan appointment on the Monday morning following the Sunday funeral and night-time shiva and the logistics of traveling back and forth from Washington, DC to Boston and back were unworkable. Two weekends later, last weekend in fact, I flew up to Boston and spent four days with Cary, just him and me in the house – without Mindy, of course. We shared an awful lot about Mindy and life, reminiscing backward and contemplating forward. One afternoon, along with Mindy’s first cousin, Julie, Cary and I visited Mindy’s grave, about 20 minutes from the house,  where I was able to pay my respects and say a few words in private. After standing alongside the grave site for a few minutes, Cary took out his smart phone, bent over toward the ground and played “their” song, sniffling and wiping away tears in the process. A very touching moment. Another afternoon, I sat with Cary at their kitchen table and read through all the condolence cards with Cary explaining all the relationships to Mindy. One night, Cary and I went to dinner with his two sons, Jonathan and Jordon (along with Jon’s girlfriend, Coleen and Jordy’s wife, Lauren). At dinner, I shared two jokes with the boys that Mindy had told years ago, that to this day, I keep in my repertoire; they had not heard them before. One involved an elephant, another had to do with Jesus Christ becoming a bell ringer. Cary’s third – and oldest son, Jeffrey, was not present as he had flown back to California on Tuesday where, after spending three weeks at home with his father and brothers watching his mother struggle to survive, he returned a few days after the funeral.

As for me, I teared up throughout the weekend. Over the years, especially after my parents moved to Florida, I didn’t see Cary and Mindy as regularly as I had while my parents were still living in Massachusetts (four times a year, generally). From 1989 on, maybe we visited one another a dozen times in person: high school reunions, bar mitzvahs, a couple of Celtic’s games and the odd occasion where the timing/opportunity presented itself. All the while, going on 45 years now, we spoke/speak every couple of weeks, picking up in conversation without ever missing a beat.

What was particularly/uniquely difficult for me – and I don’t think it is as difficult as losing one’s “soul mate,” as Cary described Mindy, just as they were beginning to embark on their final journey together: retirement, was that I too have lung cancer. As such, it was a peculiar position in which I found myself. Not only was I grieving the loss of a close friend: Mindy, way too young; she was younger than me by a couple of years, and the effect it had on my best friend, Cary, I was also witnessing first hand, up close and extremely personally, the ravages and devastating impact of a lung cancer diagnosis, a diagnosis with which I am all to familiar. Of course, I felt bad for Cary losing his beautiful wife. Of course, I felt bad for the boys losing a fabulous, devoted mother. But there was a part of me that felt bad for me. As a cancer survivor, it’s easy to pretend that this disease isn’t killing you until you attend a funeral/spend time with the family of someone who has succumbed to this terrible disease. Then it hits home, with a vengeance. “Cancer sucks,” as so many of us know, but life must go on, as difficult as it sometimes is.

Infusion Schedule is all Fowled Up

Previously, chemotherapy only had anecdotally-described memory loss: “chemo brain” as proof of a missing fragment. Recently however, clinical studies have confirmed the link. Yet, I still feel as if I haven’t forgotten that I don’t recall any prior infusions occurring on the day after Thanksgiving, as my next infusion is presently scheduled. If I remember correctly, and there are occasional disputes, this would be the first Friday after a holiday when I’ve needed to be local, and infused. And yes, the Infusion Centers are open for business on the weekdays following major holidays.

Having recently had my quarterly, post-scan, face-to-face appointment with my oncologist and survived the ordeal, we moved on from discussing the scan results to being examined to scheduling future appointments – including a brain MRI and CT Scan, and of course, my next infusion. And looking at the calendar, November 24 is that next date. Generally speaking, per previous conversations with my oncologist, rescheduling my infusions by a week or two, here or there, had not been much of a problem (my oncologist is a strong proponent of quality of life), and pretty much up to me. However, as I’ve gotten older and presumably wiser – and well aware of my creatinine level/kidney issues, my current infusion schedule is what it is for a reason – protecting my kidneys. Moving the infusion up a week or back a week is not an arbitrary, Kenny-made decision any more, despite my holiday wish least. Sure enough when I asked my oncologist if he had any thoughts on my possibly rescheduling my next infusion to five weeks or seven weeks (vs. the current six weeks), he had a specific preference: five weeks. This would mean infusing the Friday before the following Thanksgiving Thursday (the effect of which would likely cause some eating challenges for yours truly – on my favorite meal of the year no less) rather than extending the infusion interval to seven weeks.

His thinking, as he explained it to us was: he didn’t want me to wait any longer for my infusion/medicine than was absolutely necessary. Not that I don’t realize how precarious my situation is but I am sort of going merrily along of late. His rebuke, so to characterize, to me about not extending my next interval to seven weeks reminded me yet again of the seriousness of my underlying diagnosis. The last thing one can do is take cancer’s inactivity for granted. Even though I’ve been stable for four years since I was last hospitalized in August of 2013, I do have an incurable disease: non-small cell lung cancer, stage IV, and I was initially characterized as “terminal,” so hardly am I “N.E.D.”, no evidence of disease.

So my next infusion date is up to me, just not as ‘up’ as I thought it was/has been. Either I can keep my original six-week interval infusion appointment as currently scheduled or I can advance one week to five weeks (my previous regular interval). Extending it to seven weeks is not recommended. According to my oncologist, this is good news. Since my creatinine level/kidney function has not appreciably improved while extending the interval from five to six weeks, shortening the interval back to five weeks is not a concern to him which means my kidneys are up to the challenge, which is very reassuring since kidney damage is permanent. And even though waiting a seventh week for my next infusion might allow my kidneys more time to filter the chemotherapy a bit longer, it might also give the cancer some time to activate – and we certainly don’t want that.

However, nothing lasts forever, and cancer cells in particular are pretty resourceful and often figure out what’s being done to them and start doing something else which leads to different treatment. At the moment, the drug I’m infusing, alimta, is working miracles. Perhaps the next drug will be as successful, perhaps not; and that of course is the problem, the unknown. What I do know is this: a definite is better than a maybe. If I infuse the previous Friday, I definitely won’t feel like eating on Thursday. If I infuse on the Friday after Thanksgiving, maybe I won’t feel like driving. So what! A bird in hand … .

L’Arc de Triomphe

Though I studied French for five years, grades seven through 11 and became quite proficient, this column has nothing to do with French or this most famous of monuments. This column finishes the three-column arc concerning the before, during and after of my bulb installation. Having safely landed on my feet, figuratively and literally, it’s time to complete the arc, especially considering my triumph.

The bulbs are all in. No breakage to me or the fixtures, the sconces or to the house. Just a relatively simple and straightforward (for me anyway) installation: on the refrigerator door (the night light), in the living room (in the sconces) and back in the kitchen (the flush-mounted light fixtures in the ceiling). I don’t want to over exaggerate my success, but when you have had as many failures – in this context, as I have, one tends to find great joy in having avoided great complications.

I wouldn’t say or even admit to beating my chest with great pride because I do understand the level of difficulty here but, previously I have given myself a nickname when a similar task at hand has met with similar success: Taras Bulba, who had nothing to do with bulbs other than part of his name included b-u-l-b. For some reason, I also had the knowledge that Yul Brynner played the title role in a 1962 film of the same name, but had no other information of substance other than I remember him being bald – which I’m not.

As to what I remember about what I was thinking when we purchased a 250-year-old farmhouse on two acres in Montgomery County back in 1992: the price was reasonable/we could afford it, it was two acres of land in an extremely desirable County/location, it was close to I-95; and it was about time in our lives that we bought our first home. As to what I was supposed to do next; soon after we moved in, we had a two-day party (to accommodate people’s availability); for those two days I held a clipboard and took notes as many of our friends made casual observations/suggestions about what work needed to be done, inside the house and out.

We needed tile in both bathrooms – since there was none. We needed plumbing fixtures in one shower/tub – since there were none. We needed a “one-fixture rough-in” for a washing machine – since there was none. We needed central air conditioning and ducts – since there was none. We needed phone jacks/telephone wiring since there was only one phone outlet for the entire house. We needed a new oil boiler since the unit in the basement was from “the year one” (to use one of my late mother’s expressions). We needed chimney repairs and liners. We needed an upgraded electrical panel. As for the property/grounds; do you think a lifelong renter with zero interest, aptitude or experience had any of the tools necessary to maintain two acres? That’s a rhetorical question if there ever was one. In over my head doesn’t begin to scratch the surface of the depths of my immersion.

But my wife, Dina, loved the house. It reminded her of Chester County in Pennsylvania where she grew up. And the price offered good value. Within one minute of our initial visit to the house, after walking through the living room across the old-fashioned wide pine floor boards pass the cooking fireplace and stepping up into a formal dining room with another fireplace, I knew Dina was sold. Fifteen minutes later we exited the house; didn’t flush a toilet, didn’t turn on a faucet, didn’t flick a light switch, did nothing except walked around. We made an offer the next day, and the rest is basically this column.

As much as I thought I knew, little did I know what I was actually getting myself into. It’s been 25 years and I’m still way better in French than I am in homeowner. I don’t call myself Taras Bulba for nothing. I call myself Taras Bulba for something: bulb replacement. It’s not much I realize, but it’s the best this man can do. C’est la vie.

Weakened Wherewithal

Say that three times quickly. Heck, say it one-time slowly. And then welcome to my whirled: the world of cancer treatment and survival.. A ‘whirled’ in which, eight years and nearly eight months post diagnosis, I continue to live, breathe and write.

Occasionally it happens, as it is happening now, that some of the most excruciating demands of being a cancer patient, occur simultaneously – or a reasonable facsimile there of. For me that means 24-hour urine collection, pre-chemotherapy lab work, chemotherapy infusion, CT Scan and then the appointment with my oncologist to discuss all the results; occurring over 13 days – with intermittent days off for good behavior.

Typically; meaning every minute, every hour, every day, every week, etc., maybe not every second, I am thinking about cancer; though I wouldn’t say I’m preoccupied (others might). And of course, it’s certainly understandable and reasonable to do so when every day over a fortnight, you are waiting – as we say in the salesmen world, ” for the other shoe to drop.” Having endured this cycle over the last eight and a half years with varying regularity, I can honestly say that whatever symptoms have manifested themselves – or not, have never provided any consistent assurance that my life/life expectancy had not changed for the worse. It’s not until the appointment with my oncologist occurs – or sooner if he emails me the scan results, that I learn the facts of my case. All of that being said, as my friend Frank has often said to me: “You’re in pretty good shape for the shape you’re in.” Don’t I know it.

However, yes there’s always a ‘however’ in the cancer-patient-surviving-against-all-odds ‘whirled,’ there are no guarantees. In fact, there are only two guarantees: death and taxes. The former is way too close for comfort and the latter, I’m already taxed to the hilt, emotionally. Somehow, I have to get through because “the alternative is gloomy” to quote Dr. Mobley, the doctor in Miles City who treated Augustus McCray in the epic miniseries, “Lonesome Dove.” And so I try not to be gloomy.

However, there’s that word again, circumstances/schedules randomly bring down the weight – and wait of my ‘whirled.’ These 13 days can never pass quickly enough. But that presumes a good result, which one would want to know as soon as possible. But what of a bad result, leading to an exponential increase in anxiety – and fear, ultimately leading to a treatment unknown. That I might not want to know so soon. Not that not knowing serves any point or helps coordinate the next treatment plan, I’m more afraid of hearing something I haven’t heard much of since February, 2009. To quote my late mother quoting somebody: “No one gets out of this life alive.”

That of course is the point of this column, and the effect of having all this cancer stuff happen at the same time. I can take it, generally; as my late father used to say: “KB, I have confidence in you. You have broad shoulders.” Nevertheless, I worry about the figurative straw breaking my emotional back. Cancer can do that. It did it to my mother-in-law, Peggy, where over a few days the situation went from bad to worse to finally, the worst.

Somehow, I have to compartmentalize all this negative energy and focus on the positive. And that positive turns out to be an early email from my oncologist basically saying that my lung cancer remains stable. Now we can go to my appointment on Monday “unencumbered,” to once gain quote my late father. The pressure is semi off. Talk about relief. Now maybe I can relax and try not to think about my next infusion, my next scan and my next appointment with the oncologist. There’s no harm in trying, right?