Thread by @marklewismd

Today marks exactly 25 years since I lost my father to cancer.

Since it was his illness that catalyzed my career in oncology, I’m reflecting on what’s changed a quarter-century later, and what’s remained the same about this wretched disease.

THREAD 1/

There's still no right way to break bad news, but there are many wrong ways. Words matter. Especially words that force you to confront your own mortality.

Diagnosed at 42, my father called cancer a mid-life crisis that could prove closer to his life’s end.

He was right.

2/

The way my Dad learned of his problem was as impersonal as possibly imaginable.

My family was immigrating to the US and we all had X-rays to rule out tuberculosis. A government official called to say there was no sign of TB.

But …

3/

… there was a pineapple-sized “spot” in my father’s right lung. Then the dispassionate man from the embassy hung up, unaware or uncaring that the ominous opacity he had conjured would cast a long shadow over what was supposed to be our sunny new life in the American South.

4/

Our first weeks in this country were spent decoding a new dialect, not of Texan drawl but of medical jargon: mass, lesion, tumor.

These remain linguistic contortions to avoid mention of The Disease That Must Not Be Named.

5/

Some call it The Big C, a proper noun for a proper menace.

Others never dare speak of this imperial malady, leaving it deliberately unsaid like Yahweh.

6/

And now, as an oncologist, I understand why. Because once you say cancer – CANCER! – it’s hard for the patient to hear anything else.

All the less malignant words get drowned out by the tinnitus of terror.

7/

Another cacophony follows the deafening diagnosis too: a din of well-intentioned advice from friends and family.

Unsolicited recommendations of crash diets, herbal cleanses, and natural remedies accompany -- sometimes even outnumber -- words of sympathy.

8/

It is understandable to yearn for treatment that is both 100% safe and beneficial.

I always tell my patients that I try to marry tolerability & efficacy when I prescribe their therapies, largely because I saw my father suffer from indiscriminate toxicity.

9/

Chemo’s bad reputation was well-earned through years -- decades, in fact -- of sharpening a blunt instrument, an iterative refinement of poisoning.

Sure enough, my Dad went bald, had intractable nausea, and was admitted with complications after almost every cycle.

10/

These days I am able to reassure many of my own patients that they should anticipate avoiding this unholy trinity of side effects -- hair loss, vomiting, hospitalization -- as treatments inflict less collateral damage and supportive care measures have improved markedly.

11/

And yet, despite these advances, it remains necessary to balance hope and reason, a tightrope between irrational exuberance and therapeutic nihilism that the patient & oncologist must tread carefully together.

12/

Over the course of the disease, ever-greater expectations are placed on treatment, growing with the cancer.

After exhausting his conventional options, my Dad agreed to at a last-ditch effort to prolong his life with an infusion of paclitaxel, a “natural remedy” itself.

13/

Forgoing the relative comfort and peace of passing at home on hospice, he instead died in extremis in the hospital.

At that time paclitaxel was still manufactured directly from the bark of the Pacific yew tree, making it highly allergenic.

14/

The very next year, 1995, the drug became widely available as a semi-synthetic product, far less likely to provoke anaphylaxis, but that improvement in paclitaxel manufacturing came too late for my late father.

15/

Herein lies another enduring lesson about cancer: yes, we are making progress in oncology. But not nearly fast enough for those dealing with this disease in the here & now. To them the pace of research seems glacially, agonizingly slow. We must do better, and quickly.

16/

That is not to say my Dad wasn’t a beneficiary of new drugs himself. Three years before his actual death he was admitted to the ICU with neutropenic sepsis. The end looming, his oncologist suggested a novel agent to stimulate the recovery of his white blood cells.

17/

That product, GCSF or Neupogen, restored his immunity and allowed him to fend off what would otherwise have been a fatal infection. My father described it as a “spine-tingling miracle of providential timing”, and he was grateful for the extension of his time on this earth.

18/

And here is the final lesson, coming not from cancer but from the patient.

My Dad would never have described the disease as a gift, but he did see it as a galvanizing chance to suck the marrow out of his remaining life. Near the end, he wrote:

19/

We are not guaranteed threescore years and ten on this earth. Our birth certificates come with no promise of longevity. But we can follow my father's example and enrich our numbered days with meaning, intensity, and value.

RIP, Dad. I miss you dearly.

Alan E. Lewis, 1944-1994.