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.

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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?

“Righty Tighty, Lefty Loosey”

So I’ve been told mnemonically for years. But when you’re home and automotive-repair challenged as I am, everything is much easier said than done, especially when the mnemonic device is easier to handle/figure out than whatever tool and/or schematic is necessary/advisable for the at-home/in-driveway repair. (We don’t have a garage, or much of a basement for that matter. It’s more of a cellar, actually. In fact, I call it “the dug out,” so lack of spatial accommodations can exacerbate the problem)

And that’s sort of how I feel whenever I attempt a home/car-owner-type repair. Soon after I organize whatever thoughts and tools I guess I might need: within minutes of the initial effort, I will have likely complicated the repair and will be forced to dig myself out, sometimes literally. I’ll spare you the details, but suffice to say, I am a man of my word and that word is disaster. To invoke the great and often-quoted Dirty Harry

: “A man’s got to know his limitations,” (Magnum Force, 1973), and believe me, I do.

Granted, replacing bulbs in my house, as written in the final paragraph of last week’s column: “What To ‘Ware,” ranks pretty low on the home owner’s list of honey-can-you-do?. Nevertheless, challenges do present themselves, especially when height and a ladder – or a step stool, with no spotter, are involved. And when I’m looking up with arms outstretched attacking the problem: light fixture from multiple angles, sometimes, when I place my hand on the bulb, I begin to lose my orientation and am unsure where’s ‘Righty and where’s ‘Lefty.’ And even though I always remember ‘Tighty and ‘Loosey,’ when ‘Righty Tighty, Lefty Loosey’ doesn’t immediately bring results, I tend to lose patience – and confidence, and slowly retreat to lower ground to reassess.

Unfortunately, there’s no one to call. I mean, when you fail at the most basic and fundamental responsibility a home/car owner has, it’s difficult, even for someone with as little ego as me, to admit abject failure. Repairing a toilet, installing light fixtures and/or ceiling fans; sawing, sanding, measuring, leveling and drilling; lifting, balancing and carrying; and anything else involving plumbing, electrifying; and even hammering and screwing in general, are tasks I don’t mind asking and/or paying for. Having been down this road many times before, I know it’s a path that won’t lead to my redemption.

So not wanting to make a bad situation worse, or create a problem where one or two previously didn’t exist, I have to employ the simplest of solutions. And what’s simpler than “a pithy observation that contains a general truth:” an aphorism (Dictionary. com), an aid to one’s lack of memory and ability to perform even the most basic of tasks, particularly as it pertains to a home owner: bulb replacement.

Not that this inability is at all defensible. It’s not. It’s totally indefensible and one whose defense is not all explainable by the most offensive of terms: cancer. Which as you regular readers know has been the bane of my existence going back to late Feb., 2009. That’s when my Internal Medicine doctor called me at work to share the results of my previous week’s surgical biopsy. His suggestion was that we met in his office to discuss the results. I shook my head in disbelief. If he wants to meet me in person, the results must be bad, I thought. Otherwise, he’d just tell me, right? I asked him to hold on as I found a private office for us to talk (me to react) and braced myself. He told me the growth was malignant and suggested I see an oncologist as soon as possible. An appointment was set for the following Thursday.

Much has changed in my life ever since that fateful day, but not as it concerns this home/car owner’s inability to handle the most mundane tasks. Might haven actually gotten worse. As for “the cancer,” as “Forrest, Forrest Gump” described the cause of his mother’s death, not so bad. I am alive and reasonably well, eight years and nearly two months out, six years plus past the end date of my original “13 month to two year” prognosis. Of that I’m proud. As for the home and car repair deficiencies, I could care less. I have to admit though, it is laughable – and pathetic.

What To “Ware?”

Recently I received a very generous offer in the mail: a $10 gift certificate from my local hardware store acknowledging my upcoming/now passed birthday. From what I could read, there was no minimum purchase, no exclusions and no small-type print, just a reasonable expiration date: October 31st, approximately six weeks out from the day I received this unexpected gift. More than enough time, one would imagine.

The only problem: what am I going to get at the hardware store, other than the employees’ pity about how little I know about so much? Most of the time when I’m in a hardware store (typically I’m not browsing, unlike the cookie aisle at the supermarket), I’m attempting to solve a problem I have at home for which I have very little experience and extremely poor instincts at rectifying. Not only do I rarely know what I’m talking about, I don’t even know the proper questions to ask to enable/assist the employee in figuring what the heck my problem actually is – other than me, that is.

I’m very much out of my element in a hardware store. A fish out of water doesn’t begin to describe my situation. Tevye, from “Fiddler on the Roof” in speaking to his daughter, Chava, about marrying outside the faith came close: “a bird may love a fish, but where would they build a home together?” Build a home? I have enough difficulty maintaining one that’s already built.

When I’m asked, or when I offer it, usually I say: ” I know two things: sports and chocolate.” I guess I could also add being a cancer patient/survivor, but I don’t want to redirect a perfectly innocent conversation into a totally different direction: me and my druthers. Although, my situation has been publicly consumed in the Connection Newspapers going on eight and half years; in person, I try to not let it be the first or even second thing that comes out of my mouth. And I never initiate, though I’m happy to respond if asked. Generally speaking, I’d rather it not be about me and my cancer. As my mother used to say “It’s enough already.”

But none of this comes up in a hardware store. In fact, the only thing that comes up is my Adam’s Apple as I sheepishly swallow and admit how incapable I am as a homeowner/do-it-yourselfer and how much help I need to do almost anything. At least the parking is free so it’s not a total loss.

As you might imagine, this situation doesn’t exactly lead to an easy conversation or a satisfying outcome. Quite the contrary. I know one thing for sure however, if left to my own devices, either I will cause additional and costly damage in my crude attempt to self-repair, or I will hurt myself in the process. And waste money as well, as the end of the day will likely find me and the problem no closer to a resolution than we were at the beginning of the day. As William Shakespeare might have written: it will be much ado about nothing as nothing much will have been done. In these recurring circumstances, all I can hope for is a safe landing, so to speak, one in which, as pilots often joke: I can walk away uninjured.

Given that I’m a tool twit and have failed miserably at homeowner 101, what then could I possibly buy at the hardware store with my gift certificate? I just got an idea: lightbulbs. I couldn’t possibly screw that up, could I? I mean, they’re supposed to be screwed up – into the socket, right? What could be more natural for me? One last question though: when I place the bulb into the socket, do I screw them to the right or to the left?