A Trek Through Pain: Another Round of Cancer
It started in June with chest pain. Which morphed into the deepest, most hideous pain I have ever experienced — nerve-pain in the lungs. Which now, five months later, thanks to intense radiation. has become but a memory. Which entire experience, so it is never repeated (I sincerely hope), has launched me into a preventative regimen of chemo pills for the rest of my life. A surprise plot twist concludes this story.
Little did I know, at the outset, that this would be another round in what is called “living with cancer.” Following are the details, with the take-away pointers and deeper insights gleaned. The operative word here is: “through.” I got through the hideous pain.
THE TREK
About the chest pain: At first I had no idea cancer was involved. For 18 years I have lived with thyroid cancer, which five years ago invaded the lungs. Yes, at my last annual check-up at Fred Hutchinson Cancer Center, my Endocrinologist told me a cancerous nodule in a lung had grown “markedly,” but I didn’t connect it to this new pain.
This pain seemed to emanate from a surgical scar on my chest, which my doctor-father would describe as “angry.” In the past I treated it with Neosporin; this time, no result. Meantime the pain was building, from Level 3–4 to 5–6. I saw my Primary-Care physician, who immediately ordered an ultra-sound to check for breast cancer. The report? “Not a trace.” I was relieved to duck a new cancer, but: “Doctor, the pain is now 7–8,” to which she replied, “Carla, scars should not hurt that much”; something else was afoot. With the Fourth of July upon us, she urged I go to an emergency room, get the panoply of tests, which I did next day: X-rays, scans. The doctor reporting the results was grave: A “mass” in a lung was pressing on the lung’s lining (pleura) and a rib; he worried major nerve-pain was imminent. Contact Fred Hutch asap! Meantime, if I had “breakthrough” pain, come back (I did two days later, for Oxycodone.)
Women are not always believed by the medical establishment when they report pain. (See: tennis great Serena Williams who, disbelieved, almost died giving birth.) But that is not the Fred Hutch way: My Endocrinologist said of the message I’d left, “I know you are tough, you would not report severe pain unless you experienced it.” (The scheduler believed me, too, slotting me “first thing after the Fourth,” on 7/5.) After confirming the mass in my lung was indeed the nodule grown “markedly,” my Endocrinologist issued urgent referrals to Oncology and Radiology.
While I was believed, the “system was full up” at Fred Hutch and, despite urgent referrals, I waited two weeks to see Oncology and Radiology, then another month to start radiation. During which time the nerve-pain in the lung increased, such that I had to make constant use of the powerful painkillers Oxycodone and Gabapentin. To get some sleep, I doubled up on these meds, then when pain pierced through at the three-hour expiration mark, would double up again. It was, Dear Reader, Hell. Everyone reacts to opioids differently: Heretofore I’d always refused Oxycodone, because its effect on me is like a giant pressing his foot on my heart; it feels like a constant heart attack. But: I simply had to bear it. I did, but the drugged life is one I despise. Moreover, I could not even lie down anymore, because of the tumor’s location in the lung lining. I had to sleep in my recliner, which is like sleeping in coach on an airplane.
How did I cope? With the best painkiller ever: work that absorbs, about which, more later.
When we did see the Oncologist, my husband Larry and I were distressed to hear, rather than a game plan to kill the cancer — my cancer would never go away — she recommended long-term use of painkillers. I replied that, based on current experience, I’d be a forever No. When she mapped out long-term chemo for me, my first response was also No. As I imagined it, chemo would produce the same grog that painkillers did. As I explained, I am a writer who feels her best work lies ahead: big projects — books, plays, novels — that, more than commentary, require conceptual nimbleness, which I can’t sacrifice to grog. As we left I said to Larry, “Guess I have to settle for never feeling well again.” Larry confessed his heart sank, too. In the interim before seeing Radiology, I slid into the Slough of Despond, my thoughts with the Biblical sufferer Job.
Yet in that interim, we picked up useful “intel” about my Radiologist and his supreme skills. Also, I am too much the Woman Warrior to allow the disconsolate state to dominate for long. As we headed for our appointment, I loaded my eggs in Radiology’s basket: “Doctor,” I said when the Radiologist entered the room, “I hear you are a great shot.” He paused, then, bless him, laughed. What followed was a much more positive outlook: that it was all do-able — to kill that spot of cancer in the lung; that it was not inaccessible; that if there were a recurrence, there would be more radiation. As we left, I said to Larry, “Did we just get a reprieve?” “We did,” he said.
About the Hell of nerve-pain: Normally, I am not an adjectival writer. As a commentator writing at a time when America is in deep peril, I seek the nouns and verbs to rally and reform my fellow citizens in a massive rescue operation. Accordingly, time spent on lyrical lamentation, mired in adjectives, is (for me) time wasted. But when in the grip of nerve-pain, a category all its own, this writer did wonder: How else do I describe it, but with adjectives? To be economical about it then, nerve-pain is: hot and piercing, savage, nausea-making, metallic-tasting, merciless. Also breath-taking: It’s like the pain you get when you hit your elbow. Again, from an early point, my nerve-pain was controlled by painkillers, but, again, at the three-hour expiration mark, that deep-seated pain pierced through, reminding me of my own deep peril within. After all, if radiation did not work, my demise was in sight, and it would be painful in the extreme, requiring morphine in the end. But radiation would work, my Radiologist promised. I kept phoning my weekly reports to the Oncology nurse, about my pain, now rising to Level 8–9.
Another adjective describing nerve-pain: fatiguing. In the extreme. Never one to nap, either in childhood or as an adult, I now dropped off anytime, which then put me off my bedtime drop-off, meaning another sleepless night. After weeks of such havoc, one is reduced to a physical lump.
I was in this state, near the two-month mark, when my brother Ted, a retired nurse, called one Sunday afternoon to ask, “Well, Sis, how’s it going?” Hearing my baby brother’s voice, knowing he had spent the last 13 years of his career in oncology, I felt the floodgates open: “Oh, Tedso, not so good” — and, my poor brother, I could not stop sobbing. Instantly sympathetic, he kept intoning, “Yeah, pain breaks you down, it just breaks you down.” I tried to recover myself and show gratitude, first for my medical team: Early on, when I experienced swollen legs, two doctors immediately became concerned about blood clots, and I had an ultra-sound next day, ruling out that danger. As I said, tearfully, “I am surrounded by medical competence, I am so lucky.” I also told of the 50 “Select Friends” I mass-emailed with periodic reports and how many of them were “so upset,” “had tears” for me, prayed for me. “I am,” I wept, “surrounded by love, again I am so lucky.” We ended with Ted adding that “Pain is so hard on the heart.” I said I know: Usually I wear earplugs for work and sleep, but I can’t now, because my heartbeat is too loud in my ears.
Whether it was my weekly reports of high-level pain, or my statement “I think this 78-year-old body is nearing its limits,” suddenly I was cleared for a PET-scan, a full-body scan enabling the Radiologist to map out my radiation. Instead of the planned ten sessions, I would have five, but at a more intense dosage. Days before starting, my Radiologist called to ask, “Where exactly are you feeling the pain now?” and I told him; he confirmed that was what he saw on the scan. He ended our call by saying, “We will take care of this, Carla”; all I could squeeze out was, “Bless you, Doctor.” Two months into this trek, I would finally be rescued.
Radiation may seem a benign process; I know I thought it was. And indeed the first two sessions seemed so, but then I felt the impact. By the third session I told the tech, “The Radiologist is not fooling around, is he?” and he replied, “No, he is not fooling around.” I added, “Please tell him to keep it up.” After the last session, the tech, helping me up, said, “Now you get out of here and don’t come back” and I said, “Yes, and I hope never to see you again!”
The pain post-radiation, I was told, would get worse before it got better at the two-week mark. Level-10 pain, the screaming-out-loud kind — harder on Larry than me — occurred a week later, the night before a Zoom call with the Oncologist. I dosed up with painkillers, then, with pain top of mind, I spent another sleepless night formulating a plan: My two top priorities were now prevention and pain management. As to prevention, by now I accepted the Oncologist’s early recommendation of chemo pills as the best means of preventing another cancerous nodule in the lungs from “going hot” — now my Number 1 objective. It was a Select Friend, an artist, who persuaded me, telling me that another artist friend on long-term chemo “has all the creativity and energy she needs.” As to pain, my tears persuaded. Noting radiation produces inflammation, the Oncologist prescribed a steroid; we discussed a nerve block. (However, the pain management doctor we met later said nerve blocks don’t usually work for the lungs — hmmm.)
The post-radiation pain did subside at the two-week mark — only to be replaced by a different kind of pain: the notorious side effects of chemo, specifically chemo pills — nausea, fever, chills, vomiting, achiness, and other “flu-like” symptoms. I could barely eat because I could barely swallow; I got so weak that Larry became truly alarmed. Two weeks in I developed internal bleeding and landed in the hospital five days. There followed three months of complications: intestinal distress, bronchial coughing. (Now we understand better the “reduced immunities” that come with chemo pills.) During this time, my Oncologist suspended the chemo pills; we will resume in a few months — at a lower, safer dosage.
And now for the plot twist: During that period of complications, when my energy was reduced to 5% of my normal level, I had another scan (Larry delivered me there in a wheelchair) — and the results were phenomenal. Even though I had taken the chemo pills for only two weeks before suspension, it was long enough not only to stop the spread (metastasis) of cancer in the lung, but the tumors were actually reduced in size! In a word (or rather two), the chemo pills are my “silver bullet.” The genius of the chemo pills: They are “married” to my genetic code, which my Oncologist secured from the biopsies of my two earlier cancer surgeries. They are my bespoke suit of armor, again my silver bullet. You bet I will resume the chemo pills, just as soon as I get to full, or fuller, recovery. I am now back at the gym, to pursue that fuller recovery.
Having announced at the top that I am through the pain, I must qualify it: I am through the worst of it. But what I call “ghost pain” remains: emanating from the original site, but at about 20% of that original level. (I still can’t lie down longer than 15 minutes, so Larry solved the problem with a bolster pillow, on top of which go my regular pillow and neck-rest, putting me at a 45-degree angle. To sleep, I lie on my side.) As I remain a forever No to narcotic painkillers, for relief I take the occasional Tylenol Extra-Strength. Otherwise, I am doing my best to adapt: I think of the war veteran who must go through the rest of his life with shrapnel in his body. I think of the film “Lawrence of Arabia”: how pain can be borne with a “trick” of the mind —of simply “not minding that it hurts.” (I am working on the “simply.”)
TAKE-AWAYS FROM THE TREK
The practical takeaways from this ordeal are few, but they are clear:
One: To function while in severe pain, you need to be absorbed in something bigger than the pain; mere distraction won’t help.
I cannot stress this point enough. For me, it is work, specifically writing commentary. At least a half-dozen well-meaning friends urged me to “step away” from work, “give it a rest,” while I was on this painful trek. I took pains in return to explain: Sure, a few days of, say, reading poetry or watching movies will take your mind off the searing pain. But, believe me, not for long. Pain that keeps pounding its point home requires special measures, mainly (I believe) mental: I’d visualize riding an elevator to the top floor of a tall building, then taking a helicopter off the roof, flying ever higher and higher for a bird’s-eye view of the world and the human parade — the ideal point-of-view for a commentator. Works for me and it can for you, too. Whether it is quilting or carpentry or sinking your hands into your garden, the sinking into is the point.
Two: To make life-or-death decisions, you need a trusted partner.
Pain can interfere with your senses, like hearing: Are you hearing everything the doctor is saying, especially the options to be decided? Having another set of ears, and a caring heart, at your side helps infinitely, because: Making those decisions requires total comprehension, rationality. Yet here I will contradict myself somewhat: About the chemo pills, Larry and I, while we understood all the particulars, disagreed. I was a go, but Larry worried about the lifetime commitment. Yet that night of Level-10 pain forced my commitment; in the end it was emotion, not strictly rationality, that decided me, though I did secure Larry’s agreement: “Dear, I need to do this, are you with me?” and Larry said, “I am with you.” When we learned the good news about the pills being my silver bullet, as we processed the import later at dinner, Larry said, “Wow, if you hadn’t charged ahead with the Oncologist….” and I completed the thought, “Yeah, I would not be long for this world” [pause for tears]. A dialogue of trust: It is invaluable, be it with spouse or family member or friend.
Three: Lay out to your doctors exactly why — and, importantly, how — you want to live.
It’s what I call “leaping the clinical barrier.” Your primary-care doctor may know you, but specialists you consult will not: It’s important they know you, too. My Oncologist and Radiologist are now clear on why I want to live: Both wrote in their initial reports some version of “Patient is determined to keep writing.” (I bring in one of my books, as show-and-tell; I quote John Keats, “When I have fears that I may cease to be / Before my pen has gleaned my teeming brain.”) It is also important they know how you want to live. Both these doctors now understand my antipathy to “grog,” my need to be “clear in the head,” thus no mind-altering meds. With serious illness, this bargaining may seem absurd: As Franz Kafka wrote, it all comes down to “His Majesty, the Body” — ultimately, the body will rule. But if there’s any room for maneuver, then maneuver; it beats total helplessness. Stating to your doctors why and how you want to live is not only useful to them, but to you. You may never before have said the words “I want to live because…,” but the affirmation will itself be tonic.
DEEPER INSIGHTS FROM THE TREK
It would take a book to unspool the deeper insights one gains on a trek through pain. But the short version is possible, too. Here are mine:
Definitely, I feel altered. Gone is my former dynamism and quick laugh. Life holds fewer amusements now, but it is also more precious, dearer, and in deep need of reconsecration. When I was discharged from the hospital after the internal bleeding (which threatened to become bacteremia, where bacteria enter the bloodstream), once I was in the open air, all it took was a gentle breeze rippling through the lacy leaves of the trees outside the entrance to set me off. In the car I broke down — “I’m overwhelmed,” I said. Even though we were in the patient drop-off zone, Larry cut the motor and listened as I sobbed about how fragile and beautiful life is, how close to “the Veil” we were, how grateful — deeply, deeply grateful — I was for his companionship in the Valley of the Shadow of Death. Then, seeking to recover, I cracked, “I can’t wait for a change of subject.” (Larry confessed later he was “terrified” about the bacteremia, which he knew was one step from sepsis, meaning: the end.)
What does pain teach? Not much, actually, other than you desperately want it to cease and desist. With me, pain is nausea-inducing. And while there, I confess I became nauseated with the world: how little it learns over the centuries, how cruelty and spite rule, how rare are kindness and sanity. And America: How could America be wrapped around the axle by the amoral Donald Trump? It took effort — concerted effort — to fall back in love with the world (Trump excepted). Bodily weakness also put me on a wrong track: Though I am a writer through and through, for a fleeting moment I was through with it, thinking: If I am so weak, I cannot write. But soon I tired of that whine in the head and took myself in hand: “Nonsense, Carla, writing takes zero — zero — physical energy, get cracking!”
As I close here, I give another shout-out to the companionship of marriage. I tell friends “Larry has been an absolute prince (and then some).” I worry my medical crisis, which has consumed us since late June, has pulled Larry off his agenda, as he devoted himself to doing for me, but he assures me he’ll catch up. We now speak of death with more ease than before — actually we refer to “the end,” not death — and we talk of the things we each want to get done before “the end,” health permitting, the ultimate factor as we have been reminded again. Friends and their love and support have been sustaining, notably the Select 50; four of them selected themselves out as the Super-Select, checking in almost daily. As ever, my two brothers were stalwarts, as was our best friend Joe, who’s always good for philosophical reckoning. When I was in the depths of my world-nausea, Joe hauled me out: “Let’s see, Carla. You’re still here: Check. You have the best medical resources on the planet: Check. By now you know what life is all about and you have a good idea what death looks like: Check. And, you are able to write about it: Check. Anything else?” In a questionnaire I filled out for Fred Hutch, I was asked to rate my emotional support system, on a scale of 1 to 10: I extended the scale off to the right and wrote, “It’s off the charts.”
And may I give a shout-out to my heart? What an organ! Never a flutter or irregular beat.
May I also give a shout-out to the medical profession? During COVID, an ungrateful nation came down hard on it. But for their caring, in an increasingly uncaring world, as well as their impressive competence, medical professionals are the best, and I was glad, over and over, to tell them so — to their pleasure and, frankly, surprise. I love “my” nurses and techs, with whom I interact more often than my doctors: It’s fascinating to learn where their caring comes from — either because of a father who was ill all his life or from a “passion” to alleviate the world’s suffering. My radiation tech — his name was Scott — after the last session when he told me to get lost: I told him, “I keep telling my husband I feel I’m being transformed,” and Scott asked, “How so?” and I said, “Commentary is of this world, it’s piecework. But now I want to write about Life, and Death, and Love, and Truth. Heart-work, as Rilke called it.” Scott said, “You go do that.”
Finally, to recur to the initial problem — chest pain — a public service announcement: In the discharge papers from the E.R. where we first went for help, this banner statement ran across all the pages: “Chest pain is always an emergency. Always get it checked out by your doctor.”
For now, until the next medical crisis — because of course more lie ahead — it is good to be back in the saddle, armed with my silver bullets. Weak as I still am, it’s good to be back on the upside of health, where Hope is found, not the downside, where….oh dear, the nausea again.
On with the heart-work!
On with the loves in my life, especially my dear husband.
On with Life!
For my commentary, “The Uses of Cancer: Personal Insights” (2021), see here.
