“Suffering is optional”

 

My favorite modern author is the Japanese writer Haruki Murakami.    Murakami’s writing is not light, or for everyone. He employs alternate realities and vivid descriptions of unpleasant events (e.g. murders), and his characters are often loners, separated from society either by their own devices or by circumstances. To me, however, his writing is engaging and thought-provoking, and he is a superb story teller. I even ventured to plow through one of his latest works—Colorless Tsukuru Tazaki and His Years of Pilgrimage in the original Japanese before it was released in English, and found it easier to read than I expected (it was also fairly short).

Murakami mostly writes fiction—both novels and short stories—but occasionally has forayed into non-fiction.   An avid long distance runner and triathlete, he wrote a book called What I Talk about When I Talk about Running, where he describes his interest and mental and physical conditioning for long distance events, as well as the intersection with his highly disciplined writing schedule. Early in this book, he leads off a section with the phrase “Pain is inevitable, suffering is optional.”

This phrase is highly appropriate to long distance running, but has applicability to other areas of life.    When I used to run half marathons, the last couple of miles were both mentally and physically tough. When your calves are burning and you are experiencing fatigue, it’s hard to keep going. But some of the pain is mental as well—this is what Murakami means by suffering–and exacerbates the physical pain. Repeating this phase in my head kept me focused—and also kept me going to the end.

Unfortunately, Murakami’s fictional characters often do suffer—from regret, from remorse, from loneliness and isolation, and from the prison of their own thoughts. Tsukuru Tazaki, for example, seems permanently scarred from an incident that occurred during his college years, when his group of close friends (all with names incorporating colors, which his does not, forming the basis of the book’s title), inexplicably stopped talking to him.   The plot of the novel is about his journey of discovery, many years after the fact, about what transpired to cause this sudden and total shutdown of communication from his close friends.

As I have faced serious illness after a lifetime of excellent health, I have often thought of this phrase. When I took Vipassana meditation several years ago, there were a number of participants who had chronic pain. After several days when we could all talk again, some of them related how the practice had actually lessened their physical sensation. When we pile on regret, worry, anxiety, frustration, anger (“why me?”), and other emotions to either physical pain or unfortunate circumstances, it seems that the effect is simply to magnify discomfort.

Managing this is, of course, a lot easier said than done.   Worry and anxiety (especially before CT scans) is a natural part of dealing with a disease like metastatic breast cancer.  Although like most people I am not 100% successful, meditation as well as trying to find some pleasure in every day helps me avoid adding mental suffering to the pain (which for me, includes the remorse of no longer being able to run). The pleasures can actually be quite small to achieve this effect: the cosmo seeds popping up along the driveway, a walk in the woods, a friend’s company, the arrival of the LL Bean catalog in the mail, the view of the sunset from our bedroom window, discovering an old picture from many years ago, gratitude at the things I still have and can do.  It takes a conscious effort to not only find but to focus on and appreciate these small blessings, and to live the mantra, “pain is inevitable, suffering is optional.”  But it is worth it.

 

 

 

Dropping Shoes

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I’ve often been curious about the origin of the phrase, “waiting for the other shoe to drop.” I finally looked it up on Wikipedia.  It turns out that it comes from New York tenement living, where quarters were so close that neighbors could hear people remove one shoe upon their return home from work, knowing that hearing the second was inevitable.   Over time, the phrase has obviously taken on a more sinister meaning, as in waiting for some unpleasant event to occur.

For cancer patients, waiting for dropping shoes is part of living with the disease.   You just never know what the side effects of either the treatments or the cancer itself might bring. In addition to the stress of the disease itself, these unwelcome surprises bring another dimension of uncertainty to life.  In some cases, the side effects resolve once treatment is stopped, but for others—“brain fog” from some types of chemotherapy is an example—cancer therapy can be the “gift that keeps on giving”  long after the end of a particular treatment.

Metastatic cancer patients are usually on treatment for life (unless they are exceptional responders, who are few indeed).    When one drug or combination of drugs fails to stop the spread of the cancer, you move on to another.   Whenever you start a new treatment, the oncology team will give you a sheet that describes the common side effects that have been experienced by those before you. Usually, these are expressed in percentages—e.g.,  more than 30% or 50%, 10-30%, less than 10% of people experience them.  As an individual patient, you might have some of these, none of them, or ones that haven’t been recorded–unless a side effect is nearly universal, it’s almost impossible to predict.

If a side effect is very common, such as hair loss with certain types of chemotherapy or radiation, you can mentally and physically prepare for it to some degree.   But there is no accounting—and no real preparing– for most side effects that pop up unbidden.  Some  are so severe—joint pain, neuropathy, extreme nausea, and dangerously low white or red blood cell counts are examples—that people simply cannot tolerate the drugs and either have to move to a lower dose or another therapy altogether.

The first shoe in my treatment history was just a little pixie slipper—perhaps a gentle introduction of what was to come. In addition to hair thinning, which was a common one for the drug I was on, I had one weepy eye—which was not on the list of documented side effects.  It was annoying and happened mostly when I was running, but it also left as soon as I went off the drug.  The next two treatments had minimal side effects, other than lowered white blood cell counts.   In preparation for radiation therapy, however, I had to be on steroids for a few weeks, which caused water retention, difficulty in falling asleep, and a swollen ankle/leg–I was very happy to get off those.    The drug I will resume in a few days, now that I’m done with radiation, frequently causes something called hand and foot syndrome, which leads to blisters, peeling, etc. on the palms and soles. I had only one cycle of this drug, so I haven’t faced this yet, though my oncologist already had me on a special cream that I apply twice daily to hold it at bay.

Just as capricious can be the effects of the cancer itself.  Though thankfully I’ve had only minor pain so far from the bone metastases, which I’ve been able to control with ibuprofen, in January my chin went numb, which is likely from the metastases in my skull.  In February a bit heavier shoe dropped, and I developed something improbable—lymphedema, or hand and arm swelling—which occurs only a small percentage of the time in people like myself who did not have lymph node involvement in their original cancer.  I wear a compression sleeve and a glove and have more or less gotten used to it. More recently, however, the shoe felt  heavier still — I began experiencing double vision—that arose from bone metastases at the base of my skull.   Thankfully, this has mostly resolved with the radiation therapy I just completed.

These are my examples, but other patients will have many others. Some side effects are just annoying, but others are truly debilitating and seriously affect a patient’s quality of life.  Online support groups are a great resource for finding out what others have done to manage the side effects of either the cancer or a particular treatment, and the medical team (especially the nurses) can also be helpful in anticipating and helping a patient deal with common effects.    But, to some degree, you still wake up every morning not knowing what new shoe may be waiting to drop—and immensely grateful if today, none do.

 

 

 

 

A Walk in the Woods

You have probably heard of the book A Walk in the Woods by Bill Bryson, and the 2015 movie of the same name with Robert Redford and Nick Nolte, which details in both hilarious and serious fashion the attempt of Bryson and his friend Stephen Katz to hike the Appalachian Trail which runs through Hanover, NH where Bryson was then living.   I recently re-watched the movie, which appeared on Amazon Prime, and it caused me to reflect how much trails and nature are a part of both my growing up and my current environments.

Growing up in Northern Michigan, I lived only about 10 miles from the edge of the Huron National Forest.  Thousands of trees were planted there during the Depression by the Civilian Conservation Corps, and you can still see the rows upon rows of straight pines and other varieties that are a legacy of those days.   On Sunday afternoons, my father would often take us on a drive where we would walk one of the trails or follow one of many two lane dirt roads into the forest.   Later, when I was a young teenager, these roads were also where my dad took me to practice driving.   My father’s unorthodox teaching method—which was nonetheless highly effective—was that I had to learn to drive backwards in a straight line AND learn to parallel park before I was allowed the “privilege” of driving forward.     By the time I got to driver’s ed, I was a pro at parallel parking, and I can still see in my mind’s eye the markings in the sand on the two lane dirt road where my father had placed the other “cars” between which I was to practice parking.

These days, one of my favorite places is the rail trail that runs for more than 14 miles from downtown Keene, NH through the woods to Walpole. There is a section of the trail that starts only 2.5 miles from our house, and which I love to walk.   It has been graded and greatly improved by a local nonprofit called Pathways for Keene, and is both gentle on the feet and easy to navigate.

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I used to run this trail, and probably the last time I did that was in December.   At first, when I began walking it, I was nostalgic, perhaps a little sad, for those days when I could cover seven or eight miles in under an hour and a half, feeling exhilarated by both the physical activity and the natural setting.  It was a definite adjustment to move to walking.  But now that I am used to it, I am noticing different things than when I ran it.   For example, there are a couple of spots where an old, rusted out signal has been left along the side of the trail, along with the remnants of rail ties. Stone fences, such a big part of life in New England and the subject of the famous Robert Frost poem Mending Wall, dot the scenery as well. A couple of creeks run far below the trail bed, buttressed by sheer granite rock.

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I also appreciate the company of friends, and more recently our son Harry, and have had some wonderful conversations while walking the trail.  Harry and I also did a “walking meditation,” where we remained silent for stretches, our reveries interrupted only by the sounds of woodpeckers and other birds that are coming back from the south to nest in the woods along the trail.

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I return from these walks both refreshed and peaceful, and I hope they are also staving off some of the fatigue that is common with radiation treatment in particular.  Although I am easily able to do four, five, even six miles of the trail at a stretch right now, I know that a day will come when this is too much for me.  For now, however, I appreciate every moment and every step that I can take–and I store the memories of the beautiful views and the peaceful environment to nourish both mind and spirit in time to come.

Decisions about Treatment

Last Thursday, I began two weeks of radiation treatment to my skull base to address some symptoms I’ve been having from the bone metastases in my skull.   Although I’ve switched my primary oncology care to Mass General in Boston, for this five-day-a week regimen I am able to go back to Dartmouth Hitchcock in Lebanon, NH, which is much closer.   Despite the reason for the trip, the drive through the mountains of Vermont in springtime is just glorious.

IMG_1080In today’s modern medical world, a patient often has considerable choice about the type—as well as the duration—of treatments, especially for cancer. Some of these decisions, unfortunately, are not unlike the comment Senator Lindsay Graham made on The Daily Show a few weeks ago about choosing between Donald Trump and Ted Cruz for the Republican nominee for president: “it’s like being shot or being poisoned.”


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Skull-based radiation at Dartmouth–the mask is specially molded to keep the patient absolutely still


I’ve had to make a few of these decisions in my five years of dealing with this disease, including the most recent one that has led to this radiation therapy. When I started having facial pain and double vision about three weeks ago, my oncologist ordered a head MRI and referred me to a radiation oncologist.  The direct symptoms are related to cranial nerves that are being impinged on by metastases in my skull base, but—unfortunately– the MRI also incidentally found some tiny seeds of cancer in the brain itself.   Because of this, I was given the choice of whole brain radiation to deal with everything at once, or a more limited radiation of my skull base to manage the current and potential future nerve-based symptoms.

Whole brain radiation (which I quickly termed “the nuclear option”) carries with it the risk of potential side effects of permanent hair loss, fatigue which can be severe and last up to a year, and –most concerning to me at my age—cognitive aging of up to 10 years. Of course, I might have done just fine and not experienced any of this—or had only mild effects.   But it wasn’t a chance I wanted to take. My choice was to go with the more limited radiation of my skull and to take a “wait and see” approach to the tiny brain metastases, which in any event may be addressed by the medication I’ll resume when the radiation ends.

Such decisions, I have found, are both very challenging, and intensely personal. No one can make them for you, and you can never be certain you have made the “right” choice, so you have to learn to live with ambiguity. Some people instinctively want to throw everything medical science has available, no matter what the potential side effects—the chance at a more extended life, at blowing the cancer to smithereens, at living to see the milestones of children or grandchildren, being well worth the risk and the sacrifice for them. Others prefer a more certain quality of life, albeit a shortened one. In part, this can be a function of age—younger people with children at home, for example, are in a very different situation from those who are older like myself.  But even among people my age, there is variation. I have come to realize that especially at this point in my life, I am a person who errs more on the side of quality, versus the quantity, of life.

An experience early in my treatment for metastatic disease was instructive. I was waiting outside the infusion room at Dartmouth Hitchcock when a middle-aged man was wheeled from the doctor’s area to the waiting room. He was emaciated, tied to tubes and oxygen. Presently, I saw him wheeled into the infusion area for chemotherapy. I remember looking at him and thinking sadly that this man probably did not have even two weeks to live. And I said a silent prayer that I would not find myself in this situation.

For the most difficult decision by far is when to determine that enough is enough—that more treatment has limited efficacy, and taken with the strain it causes on an already taxed body, may actually do more harm than good and hasten, rather than postpone, death.  Sometimes the decision is made for you—impending liver failure, for example, can preclude any further treatment.

In the absence of hard medical constraints, however, many doctors are reluctant to tell patients, “there is nothing more we can do”—because, if the body and mind are willing, there is probably always at least one more option they can try. Sometimes, either the patient or caregivers will push for ever more aggressive treatment even when the chance of efficacy may be small.  Others, like the eloquent Sherri Fillipo, who stopped treatment last summer and lived another nine months until her death in April, choose to end treatment when the side effects become too onerous, and to go into hospice instead.

As the director Elia Kazan wrote, “What’s called a difficult decision is difficult because either way you go there are penalties.” While I hope it is a while off, I know the day may well come when I may have to make a choice between more treatment and stopping treatment.   And I pray for the wisdom and grace to make the decision that—penalties unavoidable—brings, if not a good outcome either way, the most peace of mind.