Infusing is Rarely Amusing

Four weeks out of every five, it appears as if I don’t have cancer. Fortunately, I don’t look the part. Nor do I act the part – in my opinion. However, there is one week out of every five when I most definitely feel the part: the week after my chemotherapy infusion, when eating is a particular challenge. The look, feel, taste and thought of food and/or drink is nearly impossible to swallow – literally and figuratively. And though I’m not in any pain during this post-chemotherapy weak, I am compromised nonetheless.

Friends and family who are familiar with my “normal” eating habits (I’d order off the children’s menu if I could) have joked that since I’m unable to eat any of the usual and customary Kenny selections, perhaps I should try eating foods that I would never select: Brussels sprouts, grapefruit, tuna fish in a can, fresh fish on a platter, all condiments other than mayonnaise, all legumes and a million other foods that you probably love. Plain and boring is how I roll (a potato roll is my preference), repeatedly.

The problem is that when I’m post chemo, nothing satiates: salty, sweet or “snacky;” hot, cold or medium; fast or slow; store-bought, home made or restaurant-ready. It’s all merely a variation on a theme where my back stiffens, my head tilts back and down and my eating mind says “no.” It’s been this way for about two and a half years now. And though I don’t look the least bit undernourished, I am overwhelmed by these week-long post-chemotherapy eating fits and non-starts.

Naturally I have discussed this side effect with my oncologist. When asked how long this situation lasts, my seven-ish day struggle seems about average, according to my doctor, maybe even slightly shorter than some other patients he treats who are infused with the same chemotherapy drug as I am. Apparently, there are other patients where the eating challenges last even longer than mine. And since there’s nothing to be prescribed/recommended to affect this eating problem/lack of outcome, all I can do is live with the consequences of my treatment. Live being the operative word. So unless I stop treatment, this eating challenge will persist, presumably. (Although, there’s scan clinical information regarding side effects on stage IV, non-small cell lung cancer patients still living after eight years and four months as we’re a patient population that doesn’t much exist. We’re not exactly unicorns, but neither are we ponies at the Fair.)

Fairness – and normalcy for me was officially gone on February 27, 2009, the date of my diagnosis and the initial Team Lourie meeting with my oncologist. But so what. As of that date, my perspective/orientation became about living forward, not recriminating backward. Sure, the present was important, but the future was more important, and the past, well, it had passed. No more could I afford to consider who, what, where, when, why and how I ended up in this predicament. My goal was to remain positive, take the bad with good, survive until the next drug approval by the FDA (of which there have been half a dozen in the last two years specifically for the treatment of lung cancer) and try not to impose my problems on anyone else.

Which I believe I’ve succeeded in doing. Oh sure, I’ve imposed myself on you regular readers, but what I’ve imposed on you have been my experiences. Considering the context, I’d like to think I’ve shared, not self-indulged. Moreover, I’d like to think we’re all better off for the ‘experience.’ I know I am.


Relatively Speaking

If you live long enough, it’s quite likely that many of the family members/generations born before you will have predeceased you. Moreover, the family members born before them, two generations-plus behind, are most surely to be geshtorbin (Yiddish for dead) as well. The effect: memory loss. Specifically, the memories lost of a generation of great grandparents – and beyond, you probably never knew or for whom you have extremely limited knowledge; after all, you were an infant when your maternal grandmother died. And when your widowed mother died nearly nine years ago, you lost what may very well have been that final anecdotal connection to your family’s history, especially if your Jewish and your grandparents immigrated from Russia, Romania, The Baltic States, etc. before World War II where recorded history of Jews was evidence not documentation.

It just so happens that in my family, in fact, our closest surviving cousins, Ronnie and Gil, who themselves are in their 80s, are alive and extremely well and living with their daughter, Jayne, in Massachusetts. This past weekend, Ronnie and Gil drove eight hours to visit my brother Richard and me. And though we are regularly in touch over the phone, it has been years since we were all together in Washington, D.C. And being in their company, naturally we reminisced – ALL WEEKEND. What spawned this column was a comment Ronnie (a singer/pianist in Boston for 25 years) made in response to a question we asked about whether there was any other musical talent in the family. She said quite matter of fact that my maternal great grandfather – who I had never met or even heard of before, “was a cantor in Russia – with a beautiful voice” (who never left Russia). “What! I never knew that.” I don’t recall knowing anything about my great grandparents, maternal or paternal.

You see, Ronnie was there almost at the beginning. She was the first born to my mother’s oldest sibling and only sister, my Auntie Lee. My mother was the baby of the family – after two brothers were born. As such, the age difference between my mother and Ronnie was about 14 years, atypical for a niece and an aunt. As a result, Ronnie was witness to lots of family history that I thought might have been lost forever when my mother died in 2008. As a few examples, Ronnie knows who was present at my mother’s “Auntie’s” house for Passover Cedar in the early 1960s. She knew that “Auntie” was my mother’s mother’s brother’s widow, not my mother’s mother’s sister. I certainly didn’t. She knew that three families/our cousins lived together in this three-story home and all worked together in the family market: Levine’s. Still more that I didn’t I knew.

Another family connection Ronnie and Gil reminded us of was a family line we have in South America. Again, before World War II, one of my maternal grandfather’s (Hyman) brother’s Simon (Shimon) immigrated to Argentina where to this day exists first (Eduardo) and second cousins (names I’m afraid don’t know) I’ve never met, though Ronnie and Gil have met numerous times in Miami and in Argentina (Ronnie and Gil used to live in South Florida). The more we talked, the more we travelled back in time. But I won’t self-indulge myself and bore you any longer. I will try to wrap it up in the next paragraph.

My mother, Celia died in Dec., 2008, my father died in Dec. 2006. With their passing, my brother and I lost – among a million other things, their first-hand, on-site accounts of our Lourie/Blacker history dating back 150 years or so to Russia/Eastern Europe, before any of my relatives immigrated to America. Ronnie, my mother’s cherished niece, knows as much about our family history as there is still to know and her husband of nearly 63 years, Gil, knows almost as much. Their visit wasn’t just a weekend. It was a lifetime. A weekend of a lifetime for which Richard and I are extraordinarily grateful.

Spontaneous Confusion

Since I have some alone-time; just me and the cats, I thought I’d try to write my next column a few weeks ahead and take a bit of the time-sensitive deadline pressure off. Not that meeting my weekly commitment has been too much of a problem over the years (nearly 20 in fact), still, I thought I’d put pen to paper, literally, and see what comes out.

So far what has come out is that I’m having creative difficulty writing something that’s to be published two weeks hence. It seems/feels that writing in the present about something to be published in the future is awkward, sort of. It’s somewhere between wishful thinking and a prediction. Neither of which is characteristic of who I am or how I think. I guess my writing nature is that I like to react to reality and then address it in print, rather than anticipate it and then respond to it. Typically I prefer to be current in my thinking and honest in my prose. Apparently, I have nothing else to share so trying to explain that void is the semi point of this column.

And I suppose, without being too self-indulgent, that if a stage IV cancer patient – yours truly, who shares everything with you regular readers; highs, lows and in-betweens, has nothing of particular interest to share, perhaps it’s because I’m experiencing a comparatively easy fortnight between 24-hour urine collection, pre-chemotherapy lab work, every-five-week infusions, and quarterly scans followed by my quarterly face-to-face appointment with my oncologist, so I have minimal cancer-related business to preoccupy my life. It’s almost as if I’m unencumbered by my underlying problem: non-small cell lung cancer. And I have to admit, it’s a heck of a feeling to not have my conscious and unconscious minding my business and re-minding me that I have an incurable form of cancer. Which of course I never need reminding of; as opposed to ending a sentence with a preposition which obviously I do need to be reminded of.

Getting back to the substance – if you can even call it that, of this column: my difficulty writing weeks ahead of publication. What’s puzzling about this difficulty is how uncharacteristic of my personality it is. I am not spontaneous. I rarely do anything spur of the moment other than getting off the couch, changing the channel on the television, switching radio stations in the car, deciding what to wear, eating/drinking/going to the bathroom and/or miscellaneous other household-type duties and responsibilities. Yet the problem I’m experiencing now – related to my June 14 column, is that since I’m not being spontaneous, I’m unable to create?

How can that be a problem? That’s who I am all the time. I do everything in advance – of consequence, that is. Maybe I’m making too much out of nothing? (Oh, really.) Maybe I’m simply stuck in my head and need to get out of my own way. Not that I make mountains out of mole hills but sometimes, and I’ve told by my oncologist that I can blame my having cancer for everything, I might not think so clearly and get bogged down emotionally. Ergo, I will lay the blame for this column and it’s lack of substance, on having “terminal” cancer.

Cancer doesn’t work in mysterious ways (well, perhaps it does to researchers), it works in destructive ways: physically, mentally and spiritually. Logical becomes illogical – and vice versa, rational becomes irrational – and vice versa and manageable becomes unmanageable – and vice versa. For cancer patients/survivors, expecting that one’s life will go merrily along is totally unrealistic. Expecting the unexpected is the path of least resistance. This week’s column/dilemma is simply another example/reminder of how cancer intrudes and deludes and affects those of us who naively thought we would be unaffected.

I Hope I’m Right

Having been a cancer “diagnosee” now for eight years and exactly three months – as I sit and type on May 27, 2017, a lifetime considering the original “13 month to two-year” prognosis I was given on February 27, 2009, I have learned much about cancer that I didn’t know. In fact, I’ve learned everything about cancer I know now because previously I knew nothing. Growing up I heard/experienced very little about cancer. My parents were healthy as was my immediate family (aunts, uncles, cousins). And even though I spent many Sundays with my parents visiting my grandparents in nursing homes, the diseases/afflictions I remember hearing most about were diabetes, Parkinson’s, Leukemia and high cholesterol. Never cancer or any condition that I associated with cancer. I realize now how lucky we all were. I wouldn’t say I took good health for granted, but I might have taken it as a given. Not any more.
Everyday I wake up, as my father used to say, is a good day; and ever since I was diagnosed in early 2009, most days – all things considered, and I do consider all things, have been good days. I have been extraordinarily fortunate in how my body and mind has reacted to being diagnosed with a “terminal” disease: non-small cell lung cancer, stage IV. Rarely have I ever gone one step forward and then two steps backward. Oh sure, the early hairless days of heavy-duty chemotherapy (infused for six hours every three weeks) were challenging, but it was a process I had to endure – so far as I knew (I know a bit more now and there are many more choices/protocols than ever before).
It reminds me of a long-ago M*A*S*H episode in which “Hawkeye” met a South Korean woman after she drove – a Cadillac, into the 4077th. She needed medical help for her family. Col. Potter ordered “Hawkeye” to return with the woman back to her home. Begrudgingly he went along, mistakenly thinking she felt a sense of entitlement. After a short time treating her family he learned how wrong he had been. Later that day, “Hawkeye” saw the woman walking up a nearby trail carrying buckets of water on a pole. When he asked her why she was doing that (getting the water that way, from wherever); she replied: “Because that’s where the water is.” It struck him. and apparently, it struck me, too. As a cancer patient/survivor, that has always been my approach/attitude. “Next man up,” a common sports refrain; no excuses, keep moving forward.
Over the years, I have met many cancer patients; at the Infusion Center, at conferences, at work and at play. And I may be biased (no ‘maybes’ about it), but I have to say, we’re a fairly hearty and resilient bunch. Getting diagnosed with a terminal disease – frequently out of the blue, is not exactly the stuff of which dreams are made. Quite the contrary. Nevertheless, many of the cancer patients I’ve met seemed to have faced their demons and are standing tall against the worst kind of adversity. Bette Davis is often credited with the quote: “Old age is not for sissies.” Well, neither is cancer. It seems to be for everybody, everywhere. Unfortunately, cancer is an indiscriminate, equal opportunity destroyer; all ages, all races, all ethnic groups, all populations.
According to “Medical News Today,” “One in two people will develop cancer in their lifetimes.” So getting cancer is either a matter of time, inevitable or a random-type miracle if it doesn’t affect you. For many of us who’ve been affected already, we’ve come to learn that cancer isn’t the automatic death sentence it used to be, especially for us lung cancer patients. The research dollars and enthusiasm going into defeating this scourge are at their most significant in decades, perhaps ever.  Now is not the time to give up hope. It’s time to embrace it.