A Passing Reference

Recently, a week ago in fact, Stuart Grief, a fellow non-small cell lung cancer, stage IV patient/survivor, died from his disease. Stuart succumbed to his cancer less than two years after his late fall, 2014 diagnosis. My wife, Dina and I first met him — and his wife, Amy, in late April 2015, at LUNGevity’s (the nation’s largest private foundation dedicated to lung cancer research, outreach, etc.; http://www.LUNGevity.org) HOPE Summit, a conference for lung cancer survivors, caregivers and medical professionals, held annually in Rosslyn, Va. At that time, six months post diagnosis, Stuart said he was “N.E.D,” which means “no evidence of disease,” the first time I had ever heard that acronym. We spent a few hours together for dinner at a local restaurant one night (Old Angler’s Inn, actually), enough to exchange pleasantries and email addresses. Other than that one evening, our association went no further. However, Stuart and his wife lived in Needham, Ma., the same town/suburb of Boston where my best friend, Cary, and his wife, Mindy live. Given certain circumstances, I thought there might be a foundation for a friendship between the four of them so I encouraged all parties to make a connection, which they did, and over the next/last 15 months they saw each other socially and spoke regularly on the phone.

Though the Griefs and Louries were not in touch directly, we did receive Amy’s email updates on Stu’s treatment/health status, and of course Cary updated me as well. Hardly were we in the inner circle. We were mostly on the outside looking in. Nevertheless, I was involved, emotionally, and certainly could appreciate and understand all that Stuart and Amy were enduring. When you’re a member of the club (cancer patient/survivor/caregiver), you, (at least I do), draw strength/gain hope from survivorship stories and unfortunately feel weakened/compromised by deaths and disappointments. When I received Cary’s email last Saturday about Stuart’s death, including a scanned copy of his obituary from the Boston Globe, immediately, I questioned out loud, rhetorically, its reality and promptly called Cary. After a brief conversation, as I caught him in the middle of something, it was all confirmed. We agreed to speak later in the day at a mutually convenient time and so I hung up the phone. Then I walked from my home office to the den to tell Dina that Stuart had died. I could barely get the words out before I started crying.

It was a blow to be sure. It was as if part of me had also died. I felt sad and oddly enough, somewhat at greater risk than before I had received the news. I hardly knew Stuart, and other than the lung cancer connection, there was no other substance to our relationship. However, as cancer patients, we are all connected; we are living the same life, fearing the same uncontrollable outcomes and juggling the same emotions; and what effects one of us, good or bad, effects all of us. Hearing about another cancer’s patient’s death is the worst possible news — other than our own discouraging news, that we can imagine.

But when you actually see it, hear it — and ultimately believe it (‘it’ being a cancer death), the reality of your own mortality/ health circumstances come crashing down; at least it did for me. I got my bearings soon enough and thankfully, for me, life has gone on. Still, I feel as if something is missing from my life. And even though Stuart and I never spoke after our initial time together, I felt as if he was part of my support system and I his. Not a key part, but in the conversation nonetheless — and most definitely in the club. Stuart will be missed, but never forgotten.


The Weak That Just Was

One of my cancer-patient survivorship goals has been to, whenever possible, not look the part, act the part or live the part. This past week, the eating challenges I endured and the emotional and psychological havoc it wrecked upon me stopped me from “not” doing any of the three: I looked, acted and lived the part. And aside from the unpleasantness (some of which was detailed in last week’s column), looking, feeling and being the way I was, were such negative reinforcers that is has further prevented me from regaining my equilibrium, both emotionally and physically.

Not that I’m ever unaware of my circumstances or not mindful of my mortality/ abbreviated life expectancy, but the less obvious it is, and the less impact the treatment has on me, the more I am able to live like I’m not dying. However, when symptoms manifest themselves and compromise some of my activities of daily living, the more difficult it is for me to delude myself into thinking that my stage IV, non-small cell lung cancer is chronic/treatable rather than “incurable/treatable,” as my oncologist quite clearly characterized it seven and a half years ago.

Believe me, the last thing I need are reminders. The first thing I need are pretenders (which is really just another word for hope). And though I have absolutely nothing to complain about 90 months into a “13-month to two-year prognosis,” my reality is, every day is precious and days lost to side effects are days I can’t afford to lose. Moreover, when you consider the lack of control I experienced over this last week and the associated feelings of helplessness – along with the fear that this not eating was morphing from temporary to permanent, you have a recipe for emotional disaster. And “emotional disaster” does not help yours truly or any other cancer/seriously ill patient fend off the demons and level the playing field. In fact, it tips it in the complete wrong direction. And tipping it in the wrong direction is all it’s cracked up to be.

So much of what I am going through is psychological. I am constantly telling myself (not aloud but in print, I would admit) to persevere, not overreact, balance the bad with the good, forget your prognosis, forget your “terminal” diagnosis, forget the extremely discouraging mortality statistics, believe all the non-Western stuff I’m doing is helping, don’t slack, don’t abuse the privilege of life I’ve been given and finally, be grateful for every day.

Still, five days of not eating seemed to compromise my emotional wherewithal. It’s as if I didn’t have the mental capacity necessary to talk myself out of the dark hole I had fallen into. It was a struggle to be sure and one I’ve experienced many times before, but for some reason, and this is the scary part, this post-chemo week was the worst. Now moving forward, my next chemotherapy infusion is not for four weeks as we’ve extended the interval to five weeks (from four), alternating my future intervals to four weeks, five weeks, four weeks, etc., through my next quarterly scan in mid October. If the results of that next scan continue to be encouraging, I’ll be an extremely happy man. But as I am well aware, there are no guarantees in cancer and success is measured scan to scan. In the interim though, I have to coexist with my reality. It’s not ideal, but “ideal” left the building in February, 2009.

Lack of Food – For Thought

As I begin my post-chemo week of not eating/having minimal interest in food – and losing weight accordingly, I can’t help worrying and wondering if this is a beginning of sorts. You see, what little I know about medical outcomes/chronic conditions is that maintaining/losing weight is an indicator of something; good, bad or indifferent, maybe, but something. Otherwise, why would the oncology nurses who take my vital signs: blood pressure, temperature, oxygen level and pulse, always have me step on a scale? My weight must be important.

I don’t suppose gaining weight, however, is nearly the problem/concern that losing weight is, at least when you’re being treated for a “terminal” form of cancer as I am: non-small cell lung cancer, stage IV. And neither do I know if the weight loss occurs because I don’t feel like eating as I do now or is it because I’m still eating normally and yet am losing weight in spite of it? I just know – or think I know, that losing weight is a bit of a harbinger. Now whether it’s reversible, I don’t know. I only know that when it happens to me, every week to 10 days after my alimta infusion, I crater emotionally – for a variety of other reasons, too, and inevitably begin to contemplate my future, or more immediately, my present as it relates to my future. Unfortunately, despite the experience I have dealing with this 10-day struggle, I can’t always fend off the daemons.

I tell myself a multitude of very familiar reminders: it’s nothing new, it’s merely the predictable side effect of the drug; you’ll/your weight will bounce back, you always do; the treatment is keeping you alive/even shrinking your tumors (based on the most recent CT Scan); perhaps now you’ll be able to extend your infusion interval to five weeks (as nine months previous, you had extended it to four weeks from three) and have one more relatively normalfeeling/eating week before that next infusion; and finally, even if the Alimta stops doing its maintenance-type thing (going on three years), there is now an entire new class of drugs/treatment: Immunotherapy, “OPDIVO,” as an example, if you’ve seen the commercial, designed to stimulate one’s own immune system to target the tumors with fewer side effects, that didn’t exist when I was first diagnosed, so there are more treatment alternatives than ever before and considering my collateral kidney damage, more choices is particularly encouraging.

Yet all this internal bucking up, along with support from family and friends – who know Kenny’s post-chemo eating drill, doesn’t always stop the irrational, illogical and perhaps ill-conceived thoughts that penetrate and permeate whatever selfdefense mechanisms I have employed – repeatedly, to stem this tide of negativity. As much as I would like to believe that familiarity breeds contempt and that my life will go on with nary-this-being-a-blip-on-myradar, this “familiarity” doesn’t breed anything but anxiety and all the related mental deficiencies associated with not exactly feeling your oats. And even though I’ve been here and done it since September, 2013, I still never know/can’t know if this lack of eating and/or lack of interest in eating portends or not. Moreover, sometimes I wonder if the uncertainly is really the killer? I know it’s not the cure.