Keith’s Story

Site created on April 20, 2018

The day after Thanksgiving of 2016, Keith was diagnosed with stage four esophageal cancer. He has undergone various forms of treatment, including chemotherapies at the Mayo Clinic in Minnesota, where he began a routine of writing updates to friends and family every two weeks while receiving chemotherapy. These writings turned into a series of essays on meaning-making—how to make sense of the experience of a life-threatening disease and what has helped him cope. Recently these ruminations have been published as a book by Covenant Books.

In some of these essays, Roberts focused on advice to people who have a chronically ill friend, such as the chapter, “Awkward! What to Say (or NOT Say) to Friends with a Life-threatening Disease.” Other chapters are directed to the ill person, such as the essay “Planning for the Future When ‘Planning the Future’ Feels like an Oxymoron.” The reflections are sometimes informed by philosophical or theological analyses and sometimes by a sociological lens. (Keith has advanced degrees in both theology and sociology.)

According to early readers of this manuscript, the result is a musing of remarkable depth. For example, oncology nurse Dr. Patricia Nishimoto writes: “In my 45 years as an oncology nurse, this is the first author who has caused me to pause and reflect in a totally new way on the cancer journey. It is a privilege to read his inner dialog that is insightful, inquisitive, and thought-provoking. The author creates questions I have never considered and transforms and challenges my view of what it is to continue to live with purpose and meaning with a diagnosis of cancer.” (Patricia W. Nishimoto, DNS, Oncology Clinical Nurse Specialist). Kathleen Korgen comments, “Keith Roberts’ Meaning Making with Malignancy is a life-enriching book on death and suffering; it helps us to make sense of not just an advanced cancer diagnosis, but our very lives. It is for cancer patients, caretakers, sociologists, theologians, clergy, and anyone looking for inspiration.” Maggie Cupit, author of Why God? Suffering through Cancer into Faith writes, “Keith Roberts shares his analysis as a sociologist and his innermost feelings as a human being as he processes what it means to have stage IV cancer. The result is a thought-provoking read for any person contemplating the meaning of suffering and illness. He encourages all of us to "make meaning" of whatever life throws at us.”

Keith A. Roberts, Meaning Making with Malignancy: A Theologically Trained Sociologist Reflects on Living Meaningfully with Cancer. 2018. Covenant Books. Paperback ISBN: 978-1-64003-748-9; E-book ISBN: 978-1-64003-749-6.  More information on the book is available at http://covenantbooks.com/books/?book=meaning-making-with-malignancy.

Newest Update

Journal entry by Keith Roberts

Meaning Making with Malignancy--#33              July 14, 2018

Family and Friends:

 

Three weeks have past, so I am back in the Mayo Clinic. There have been ups and downs , but when the “downs” are more obvious and more numerous, It is a challenge to sustain positivity and hope.  More on that later. Some of my health indicators have not been very promising. Once in the past three weeks I coughed up by far the largest (semi-solid) bloody glob I have ever evicted from my body. I simply could not believe that I had something that large taking up residency in my lung. At the same time, my energy levels and overall oxygen intake seemed to have gone AWOL on me. They are nowhere to be seen. I’m sleeping entirely downstairs now simply because I can’t negotiate getting up or down the stairs without being completely winded. After walking only 20 feet or so I experience extreme windedness. I’ve also had almost no appetite at all, and that is not good for overall vitality or keeping my weight above the red flag zones.  In this case Judy is not the optimistic one of the household; she thinks I should be admitted to a hospital. I’m a bit skeptical, the primary purpose of hospitals seems to be to assure that patients can get no sleep. Further, the food served at most hospitals  is beyond atrocious. I’m not eager to voluntarily put myself in that situation.

 

I have often expressed deep thankfulness in these pages for not having serious pain, even 20 months after diagnosis.  Well, earlier this week I was called out to pay the piper. I coughed so hard about three weeks ago that I had pulled a muscle on the left side of my buttocks. Now you know: harsh, coughing can be a real pain in the butt. For the first four or five days the pain was sharp but for the most part tolerable. The worst part was that if I coughed while walking, my left leg would almost completely collapse. I did have one day of really severe pain when I was truly writhing in my chair much of the day (until some high-powered prescription painkiller finally arrived).  Medicinal marijuana is legal in Minnesota and gets authorized to use primarily in pain management. It is supposed to reduce nausea, increase appetite, and even shrink cancer tumors.  The KAR jury is still out  regarding which is a better painkiller.

 

We have also made an initial contact with hospice. Each healthcare organization within a state —Fairview, Alina, Mayo, and so forth—has its own hospice department. Our General Practitioner is just four blocks from us and is with Fairview, so we had our GP set the process in motion. I knew that hospice usually wanted a physician’s indication that the patient is unlikely to have more than six months to live. Approaching hospice has always seemed a bit like capitulation to the disease. It seemed somehow to suggest that my health situation was beyond hope, and we did not want to be in that situation. We learned from the first hospice phone call that Medicare insists one must be on either treatment or the strictly palliative care of hospice. We’ve heard wonderful things about how supportive hospice is and how wise it is to get started earlier rather than later, So we went ahead and scheduled the first meeting with a social worker from hospice. It’s a four person team, including a doctor, a nurse, a social worker, and a chaplain. We think the services sound terrific, but we would have to pay for it ourselves if we continue immunotherapy and possibly the radiation. Hospice coverage is not inexpensive--averaging $153 per day or roughly $28,000 for a six month contract. We are not financially strapped, but the bill of $28,000 for six months or $56,000 per year would be more than a little challenging. The other issue, of course, is that therapies which have some hope of healing operate on a different set of assumptions than the palliative focus on optimizing comfort and quality of life in the final months or perhaps year of life. We were a bit disheartened to learn that we can’t do both healing “therapies” and hospice support.

 

Earlier today I met with a Mayo radiation oncologist. She still does not have all of the information that she needs, but thus far she is inclined to think that daily radiation on the upper portion of the lung for five days is warranted, Because we were not redoing the entire lung, the treatment would be a bit of a stopgap and is clearly palliative rather than curative.

 

So, several indicators regarding my health reports have been less than stellar. Perhaps the most discouraging has been the unanimous recommendation of my oncology team that I need to spend the next several days and nights in the hospital. So here I am at Methodist Hospital—one of several hospitals in the Mayo system. My white blood-cells according to my doctors are alarmingly high. (Huh?) This, of course, does mean that my immunity system has rebounded in a robust manner. But when white cells exceed other indicators in that system, it usually means infection someplace. Some of my symptoms might be alleviated by low levels of steroids, but if an infection is involved, steroids could make the situation considerably worse. My oncologists feel that we need to get a strong diagnosis of what is going on with these multiple, diverse, and sometimes contradictory symptoms; until we have a better grasp of what is going on, a sudden crisis could spin out of control. I am scheduled for about four tests: CAT Scan, PET Scan, MRI, and something else aimed specifically at my left hip to see if there is any chance of bone tumor in tht hip.. The CT Scan covered head to foot, and while not as useful as an MRI, the hospital oncologists said there are new lesions and tumors on the brain. So the cancer continues its spread  I don’t know if they ever do a second Gamma knife surgery or not, but if so that may be where I am headed So here I am, exuberating in the joys of a Friday night in a hospital 90 minutes from home. Hmmm.

 

When Judy and I lived in the Boston area, we were very active in Eliot Church of Newton, MA (UCC). Judy was teaching and I was a graduate student at Boston University. That first fall in Boston, Eliot church decided to get serious about small group ministry, A retreat we attended resulted in the formation of three groups of about 9 to 12 people. Our group met fairly regularly for nearly six years and undertook a number of projects on behalf of the church. We are now dispersed from Arizona to Virginia and New Jersey to Minnesota. However, we now have a reunion every two years, and it is amazing to have a sustained relationship with the same people over 50 years. This year we hosted in Minneapolis. Because we have discussion prompts that focus our conversations there is much more depth than if we just move from topic to topic. If that happened,, or incompetence and mean-spirited nastiness of our President would likely have prevailed as topics of conversation.  Instead we were able to delve into intimate aspects of our lives and discuss those, to reflect on the aging process—including death, and what books we have read over the past two years and why those were transformative. Our time together was positive, upbeat, and transformative, 

*   *   *   *   *   *   *

In chapter four of Meaning Making with Malignancy, I discussed an important concept in the sociology of religion: plausibility structures. The issue of how one sustains commitment, hope, and clear vision in the face of counter-veiling forces is a longtime scholarly interest of mine. For example, in college teaching, how does one maintain one’s spirits and commitment when one gets stabbed in the back by a colleague, an administrator, or even students? The answer is that one must have strong enough “plausibility structures” to avoid cynicism. As I wrote in Meaning Making with Malignancy

Plausibility structures are social and symbolic systems that allow social constructions to seem plausible—even compelling—in spite of contrary evidence (Roberts and Yamane 2016). People will continue to love, forgive, offer compassion, and stand up for peace, even in the face of overwhelming odds and extraordinary hostility. To do so, however, they need a very strong plausibility structure. Plausibly structures are mechanisms that allow one to stay committed to ones better angels and better self, even if it makes one very vulnerable and even if it defies certain evidence that it is “rational” to do something more self-serving.

Although I’ve experienced both the ups and downs and at one point last summer the doctors thought I might be cancer free, the messages that my body is projecting and my various test results  are not very positive in confirming, health, wholeness, and healing. I find that I must sustain an attitude of hope and expectation, despite disconfirming evidence. In Meaning Making with Malignancy I pointed out that plausibility structures can be vital at both the micro level of everyday interaction and the macro level as we try to resist the destruction of democracy by a grossly incompetent president. The focus in this analysis is on the micro level since that is where I am experiencing the need for plausibility structures,

The first and most important element of a plausibility structure is a community of people who share common values and a worldview and can serve as a reference group. This community is able to affirm and sustain attitudes contrary to the “conventional wisdom.” Being in the presence of such a group restores one’s balance, energizes one for the stressors ahead, and re-centers one around the values that one wants to affirm. Our church, our extended families, and an extensive friendship network that has sent notes of encouragement has sustained us in focusing on positive energy and positive imaging. Being surrounded (even if via distance communication) by such people is revitalizing and energizing. Plausibility-sustaining communities do not need to be faith communities, but they need to have vision and need to help us be our best selves. One example of a non-faith-community has been the Departmental Resources Group in sociology and those active in the scholarship of teaching and learning through the ASA’s Section on Teaching and Learning. Unlike the number of professional groups with which I am familiar, this community has a culture that is cooperative, collaborative, supportive, and win-win. Just being around these folks and invested in this culture makes me feel more positive, upbeat, and committed to the common good. I look forward each year to being a part of this community, but my lack of energy and my severe shortness of breath are causing me to reconsider whether I can get to the ASA meeting in Philadelphia in August. It is looking doubtful right now. So I may need to invest in communities of greater proximity, or get my energizing “fix” via email connections to these people,

In addition to community, a worldview and values can be lent plausibility through an interactive and mutually supportive system of myths, rituals, and symbols.. Myths are stories or narratives that transmit values and perspectives; they operate to sacrilize (make sacred) a particular worldview; in addition they always carry truth. If a myth has no truth to it, it is not a myth; it is merely a fable. Factual accuracy or inaccuracy is not the point of a myth; the truth is in the values and perspectives that they transmit. Narratives of people who have been successful in resistance to cancer can be sustaining by affirming that post-cancerous construction is possible and that hope is warranted.

One of the most powerful plausibility structures in faith communities and nonprofits that have a justice or compassion focus are symbols. Edwin Leach once compared a symbol to a computer chip. Computer chips store a phenomenal amount of information. So do symbols. A cross, for example, has meaning for members of the Christian community because it reminds them of a sacred story, a particular life, a divine event, and the history of a movement. Others may experience negative memories in relationship to that same symbol, but the symbol delivers much information, and it does so with powerful emotional content. Whether the symbol is the Star of David, the eight-spoked wheel, a wedding ring, or a national flag, it stores at a later time both content and emotions. More  than a year ago I told of our niece, Kendra Roberts, who made “wearable art” in New York City (now she does so in Portland, OR). She has made for each of the original five K & J Robertses a matching pin or necklace. The one for the men is made from fossilized walrus tusks; the one for women is similar in appearance but made from a precious stone. She suggested that we wear these each day in solidarity—in reminder of the strong family ties that link us and the incredible family support is there in a heartbeat. I would think of the family support each morning as I put it on. However, after nine months of treatments things were looking very chipper, I got less conscious of being sure I had it on. I need to return to this daily habit, for symbols do matter.

Others have sent a variety of symbolic gifts: a hand-knitted prayer shawl from our current church, a small blanket signed by members of our previous church, an angel which hangs from our dining room chandelier. We receive “thinking of you” cards, notes or calls reminding us that people are lighting a candle each day and offer a silent prayer each time they pass it in their home. There are more than a dozen church prayer groups and hundreds of individuals whom we know about which offer regular (daily?) prayers.  So we are embraced continuously with rituals, myths, and symbols—not to mention multiple communities—that sustain and send reinforcing messages of hope and positivity. My weakness, my instability, my breathlessness following anything that vaguely resembles “exertion,” and my cough and constant pain over these three weeks are on-going reminders of the vulnerability of my heath and the fact that malignancy is loathe to be easily overcome.

If we hope to resist negative influences that threaten our lives and even our social fabric—forces that have great power and seem to immobilize us—we must cultivate plausibility structures: a supportive community, myths, rituals, and symbols that cultivate our better angels and enhance our agency.

Frankly, people will believe all sorts of things if the plausibility structures are strong enough—that gods will arrive from space ships to save us (“Heaven’s Gate”), that handling poisonous snakes is part of what is required of Christians and people of faith who handle them will be protected (snake handling churches of Appalachia), that a man who died on a cross two thousand years ago is somehow relevant to us today, or that one should be compassionate and open and vulnerable as a human being or as teachers even though vulnerable persons sooner or later are wounded. We all need plausibility structures or we become cynical and hardened. We need plausibility structures or we lose our sense of agency. However, when our bodies and some aberrant cells within seem to disconfirm the wellness path, sustaining plausibility structures may experience direct challenge, even at a time when they are increasingly necessary.

Thank you for your role in fostering plausibility in my life about living with health, expressing compassion, working for justice, being incarnations of peace and love.

Peace and Love.

 

Keith

 
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