Not Hardly, I Knew You

Not about me, at first. My oncology nurse of almost seven years, a person with whom I had much in common and who, quite frankly, probably saved my life back in August of ‘13 when I showed up at my regularly scheduled chemotherapy infusion with an oxygen level of 85. This ultimately led to a week-long stay in Holy Cross Hospital to solve the problem which was that 4.7 litters of fluid had accumulated in my lungs, a not uncommon occurrence for lung cancer patients. It became quite clear after our first few infusions together that we were well suited. To say that I would be looking forward to my infusions because of Ron’s hands-on care and concern — and depth of our relationship might be a bit naïve (let’s face it, I didn’t want to be there at all; certainly not as a patient, although I’d be happy to visit/support a friend, family member of fellow cancer patient). But I will admit to this: I never dreaded it because invariably Ron lifted my spirits through his schtick and excellent intentions.

When I walked into the Infusion Center two Fridays ago and walked over to my barcolounger, I didn’t see Ron so I joked aloud “where’s Ron? Maybe I’ll get some decent service today?” Another nurse (all of whom I know) quickly responded and said “Ron’s not here.” “Oh,” I said, thinking nothing of it. “You mean because it’s Veteran’s Day?” “No,” she said. “He’s gone. He took early retirement.” “Wow,” I said. “Is he OKAY? Is his family OKAY?” I stammered. What few additional inquiries I made to the other nurses about when he left, his last day, what he’s doing now, if he’s moving, etc., were all met with a sincere “I don’t know.”

As I waited for my chemotherapy to be mixed/prepared (as you may or may not know, chemotherapy is not exactly off the shelf. Oh, sure, it’s on a shelf but not ready for prime time until the patient actually arrives and his vitals are taken and then, presumably along with one’s pre-chemotherapy lab work results, communicated to the patient’s oncologist for assessment and if satisfactory on to the on-site pharmacy for the actual preparation), I thought about the effect Ron’s departure would have on his patients. I imagine, they were similar to many of the ones I was having.

When I mentioned this likely effect to another of the oncology nurses, (and you get to know and are treated by all of the nurses staffing the Center, but generally there is one nurse to whom you are assigned), she explained/understood how caring for oncology patients in an Infusion Center is much different than caring for a patient in a hospital where you might see the patient for a few days and then never again. In an Infusion Center, you might see the same patient for years (for me, it will be eight years, come March 2017), she said. As such, she added, you develop relationships, friendships, much more so than a typical patient/acquaintance you have in a hospital experience.

If I were to calculate how many times I’ve seen Ron at The Infusion Center over the past seven-plus years, I would guess upwards of 90. And we talked plenty during those 90 visits, and not always about cancer. In fact, it was almost always about life. It was never morbid, it was always merrier. He was a humorous breath of fresh air in an environment/set of circumstances where the breath — so to speak, can occasionally be stale and hard to take. I don’t want to say/want to think: what about me? But if I were to allow it for one minute, one column, I would say what my brother, Richard often says after he hears a good report from my oncologist about me: “If he’s happy, then I’m happy.” Well, If Ron’s happy then I suppose I’m happy, believe it or not.

Advertisements

TFTT: Turkey For the Turkey

Thanksgiving might be my most favorite day of the year. It is a day when I can eat/feel most normal. (Cancer issues notwithstanding.) To assure that this day would indeed satiate my savage beast, I changed/rearranged my chemotherapy infusion interval so the feast would not occur on the first Thursday following my previous Friday infusion but rather 13 days hence — on the second Thursday. This will, if my most recent pattern follows — going on for nearly two years now, enable me to eat/have no eating issues (other than the many non-cancer related ones I’ve had/maintained my entire life) whatsoever relating to my chemotherapy and enjoy the day — and night without any challenges other than buckling my belt.

Not that I look the least bit undernourished, but I don’t eat like a normal adult either. Heck, I don’t eat like a normal child and I’m not referring to whether I eat using silverware — which I do, or hold silverware more like an “entrenching tool” (“Firesign Theatre”) which I don’t. If I had my druthers, I’d order off the children’s menu. That’s not to say I’d be properly-mannered sitting at a Downton Abbey dinner, but at least I’d know enough to select my silverware from the outside-in and likely not embarrass myself in the process; that is until I return every portion back to the kitchen untouched. And therein lies my problem.

I don’t like anything. I eat the same things over and over and over again. I don’t view this as a problem, more like a continuing opportunity. To say, as I often do, that I eat 10 things, might be hard to digest, but not for me. In addition to not eating much variety, I won’t try anything, and if I am compelled to do so, won’t do so in front of anybody, that’s for sure. If I don’t like the food’s appearance, texture, color, smell, description, lineage, heritage, place of origin, birthplace, where it’s been, with whom it’s been, even its name and general unfamiliarity, I won’t touch it “with a 10-foot Pole. Stretch Polansky, tallest Pole I ever saw,” (to quote Hawkeye Pierce from a long-ago M*A*S*H episode).

Not that this juvenile behavior has stunted my girth. Hardly. But it has narrowed my “confinement beam” (“Star Trek”) so to speak. I eat a lot of very little. Thanksgiving however, is the lot of which I eat. Not so much the desserts, which are usually a variety of pies and such which generally don’t interest me (and besides, unlike the turkey, I’m stuffed after the meal) but the main course: white meat turkey, potatoes, “stuffing/filling/dressing”, gravy (nowadays), vegetables, hot rolls and even cranberry sauce. If there’s anything I’m leaving off my plate, it’s probably not on my short list. And when it comes to my eating habits/choices, as you’ve presumably come to read, it’s an extremely short list.

Fortunately, for me and my peculiarities, we have almost always spent Thanksgiving at family or friends; all of whom are extraordinarily capable in the kitchen and given our close association over the years, wellacquainted with and somewhat amused by my food issues. Never more so than when my wife, Dina’s cousin, Gary makes a big production of pouring himself a glass of milk at the table. Nevertheless, I’ve always felt a welcome addition and never uncomfortable (although sometimes I’ve eaten at the children’s table).

I wouldn’t say I’m counting the days until Thanksgiving; I already did that weeks ago when I made the decision to change my preThanksgiving infusion date to Nov. 11th from Nov. 18th, but I’m certainly monitoring the calendar very closely. My oncologist regularly encourages me to find quality in my life. Thanksgiving is quality — and quantity — I value in my life, and I’m damn lucky to still have it

Feeling a Little Better

Just as last week’s column attempted to describe the loss a surviving cancer patient feels when a fellow cancer patient succumbs to his disease, this week’s column will attempt the opposite: describe the feeling a surviving cancer patient feels when a new lung cancer patients joins the club. Specifically, an individual (who I met this week, coincidentally) who exudes the kind of confidence and positive attitude necessary to endure the bumpy road ahead. Unfortunately, one doesn’t always have the luxury to avoid the road/not join the club; to quote Grouch Marx: “I don’t want to belong to a club that will accept me as a member.” If only it were that funny – and simple.

With respect to lung cancer  patients, typically a late-stage diagnosis: stage IV (there is no stage V), is heard early on the initial appointment with one’s oncologist. Given that there is at present, no agreed-upon approach to screen for lung cancer and in many cases, patients are often symptom-free or experiencing discomfort not in the lungs; nor having any difficulty breathing, coughing or coughing up blood, among other symptoms, especially so for non-smokers who now represent upwards of 25 percent of new lung cancer patients, this is not uncommon. For multiple reasons then, lung cancer remains the leading cause of cancer deaths in this country, projected at 158,000 in 2016, as well the leading cause of new cases of cancer reported every year, projected at 225,000, “more than colon, breast and prostate cancer combined,” according to cancer.org. One percent live beyond two years, according to cancer.net.

Generally speaking then, one can say, with a reasonable amount of confidence, that receiving a diagnosis of lung cancer is devastating news and for a few days anyway, knocks the wind completely out of your sails, even if you don’t own a sailboat. It’s almost impossible, eight years post-diagnosis, to articulate exactly how I felt when a doctor (an oncologist) whom I had never met told me I had stage IV, non-small cell lung cancer and advised me I had “13 months to two years” to live (I was 54 and a half at the time and a life-long non-smoker). Out of the blue doesn’t even begin to describe my reaction. Surreal, which was my general sense of what I had just heard is also a very common description, as I have likewise heard and read from other newly diagnosed cancer patients.

So you need to find help anywhere you can get it. For me, the most valuable help was/is emotional: people being supportive, encouraging, funny, unafraid to face my reality and most importantly, positive – about the negative. Don’t tell me anything that I’m doing is bad. Tell me everything I’m doing is good. Minimize the negative and maximize the positive. Don’t be overconfident but do be underwhelmed. Take my circumstances in stride. Don’t walk quietly and don’t carry a big stick. Treat me normally – in spite of my cancer, as you would had I not been so diagnosed.

If I am treated in these ways, I will – and think I have become, a welcome addition to the club. Because this is a club that needs individuals to step up and fight not only for themselves but for to others as well. And if in fact what goes around comes around, I will be similarly embraced and moreover, cared for and about; and it’s the strength in these numbers that will empower me to be the best cancer patient I can. And when I meet a fellow cancer patient, this how I will roll: concerned but emotionally available, serious but funny, respectful but disarming, realistic but hopeful and always positive about their negative. If I am turn treated in a similar way and the patient expresses the kind of good-in-the-locker-room type of attitude necessary for the long journey ahead, I will feel stronger and more hopeful for my own circumstances than I would have had I not met this new patient.

Cancer shouldn’t be a singular pursuit. I need your help, and I’m willing to offer mine. If we help other, we’ll both be better served because of it. This is not meant to be selfish, it is meant to be selfless. There is no “I” in cancer.

Feeling a Little Low

In spite of mostly-successfully not being preoccupied with my condition/circumstances/disease, when a lung cancer survivor dies, even one with whom I’ve had minimal contact; one whom I could barely call an acquaintance, the link in the chain that makes all of us lung cancer patients/survivors stronger is most definitely effected.

Not that every lung cancer patient’s diagnosis is identical; be it the staging (1 – 4), the type (non-small, small, etc.), the molecular profiling (ALK, EGFR, KRAS, HER2, etc.), the treatment or whether they were smokers or not, one cancer survivor’s death is not necessarily related to another’s. Like most things in life, more information is needed. Nevertheless,  it doesn’t minimize the loss. When one survivor dies, we all die, a little bit. Recently, a prominent figure in the lung cancer world, Jerome Sorkin, a nine-plus year lung cancer survivor died. I did not know him, though I knew of him. I passed him once while walking in a hallway at The Key Bridge Marriott after attending the annual LUNGevity Foundation conference held every year in late April. We were both leaving but heading in opposite directions. He saw me and said “Love your column.” I replied “Thanks,” and that was the extent of our interaction.

In general, and in the lung cancer world in particular, typically one wants to hear positive news/be around positive people. Otherwise, maintaining your emotional equilibrium and your living/dying existence is simply too damn difficult. The razor thin line on which all of us lung cancer survivors teeter-totter cannot tolerate too much interference. Who knows exactly what news – personally or publicly, will cause one’s cancer do what it so often does: inflict more damage followed by an inevitable decline.

This does not imply/encourage that cancer patients should or could quite frankly, live in an emotional bubble where only positive feedback and life-affirming words are allowed in. As my deceased father would have said: “The idea has merit.” The reality is however, that such an option is impractical and unrealistic (except on Seinfeld; see “Bubble Boy“). Still, it doesn’t diminish the fact that cancer survivors need to be “infused with positivity,” as I like to say. Moreover, anecdotal evidence suggest that a good attitude and a positive environment affects a cancer patient’s prognosis and enhances their lives.

Not only do I joke about having cancer, I want to be around others who joke as well and who can go with my flow and not bring me back to my reality. I spend enough time there on my own; I don’t need any help returning. Nor do I do well when I hear bad news; specifically, the death of a fellow lung cancer survivor. Intellectually, I understand that lung cancer survivors are all different, live different lives, have different motivations, etc. Nevertheless, I feel for Jerome Sorkin, I feel for his family and friends and I feel for LUNGevity where Mr. Sorkin was Vice Chairman of LUNGevity’s Board of Directors. I don’t want any lung cancer survivors to die before their presumptive time. I want lung cancer to, at the very least, become a chronic/treatable disease (like diabetes) where one can live their life to a relatively normal expectancy; and if I were to dream really big, I want lung cancer and all cancers of course, to be curable/reversible.

Until these days arrive, all of us patients live on the edge. Just as I am strengthened by stories of resolve, I am weakened by stories of fellow survivors succumbing to their disease. Right now I am weakened.

Not a Week in the Knees

This is an easy week. No 24-hour urine collection on Tuesday. No pre-chemotherapy lab work on Wednesday. No stress on Thursday waiting for the lab results (to determine if I go in for chemotherapy on Friday). No chemotherapy infusion on Friday. No subsequent side effects: fatigue, general discomfort, eating challenges, etc., for the following Saturday to 10-days-later-Monday. No CT Scan. No P.E.T. Scan. No M.R.I. of the brain and/or liver. No anxiety concerning the results, and no follow-up appointment with the oncologist to assess the damage/discuss the results from all of the above. And most importantly, no strategy session (with my oncologist) to consider the treatment options because things have changed for the worse, which at least for this quarterly moment in time, they have not! For a cancer patient undergoing treatment for an incurable disease, this week is as good as it gets.

Given my chemotherapy infusion intervals: alternating between four and five weeks; my CT Scan intervals: occurring quarterly; my P.E.T. Scan and M.R.I. intervals: every six months – and not every infusion/scan is on a similar day/date schedule, I probably experience the kind of relative calm I described in the opening paragraph, one to two weeks out of every four or five weeks (depending on my infusion schedule) per quarter. Every third month, this ‘relative calm’ is interrupted by my recurring scans and M.R.I.s. To try and summarize, I would say there’s probably three to five of these one-to-two- week intervals over the course of six months when I can semi inhale and breathe normally (lung cancer-related issues notwithstanding). Hey, I’m not complaining; it’s a living and one I’m incredibly lucky to still have, nearly eight years post diagnosis. I’m just saying.

And though I’m generally not in the chicken-counting business (nor am I in the collecting my eggs-in-one-basket business, either), I am happy take my life one day at a time, and count myself fortunate to do so, never presuming any facts not in evidence. Nor do I expect any guarantees or clarification concerning my present/future treatment and/or any side effects, challenges, compromises, relating to yours truly having cancer. As Linda Hunt as Stella, a k a “The Midnight Star” (she “always shines at night”) said to Kevin Kline – as Paden, in a bar scene from the movie “Silverado:” “The world is what you make of it friend. If it doesn’t fit, you make alterations.”

As a cancer patient, ‘alterations’ is exactly what you make. Every day. Every night. Every lab. Every infusion. Every scan. Every appointment with your oncologist. Change, as has often been said, is the one constant. To expect consistency or predictability – or dare I say, normalcy, in your cancer life, is out of the question and beyond the realm of possibility. Thinking otherwise is creating additional stress regarding an outcome/eventuality which not only is beyond your control, but totally unrealistic, too.

Cancer is like a roller coaster, but one without any tracks; and one that rarely returns to the station to allow you to get off and get your bearings. For cancer patients, the trip is non-stop, with few opportunities to change direction. All you can do is buckle up and enjoy the ride, sort of. Much easier said than done, I admit. Nevertheless, viewing one’s circumstances without any hope or humor is hardly the positive attitude worth embracing. There’s good, as this column seeks to highlight; and more than enough bad, as any cancer patient/others impacted by this terrible disease knows, to go around. As much as I wish it had gone around somewhere else, the reality is, it hasn’t and it looks as if it’s here to stay; just like me (from my pen to God’s eyes).