Richard E. Farmer

As an individual diagnosed more than 5 years ago with multiple myeloma, I have been struck by the reliance on the part of some cancer patients who place significant emphasis on clinical trials and research, and the desire to “battle and fight” the disease in order to seek cure and avoid untimely death. This emphasis also applies to healthcare providers and researchers, many of whom are the very originators of this focus. Offering hope supports that singular human need to achieve another state of being. As a need, hope is more than an emotional state with something that could be different in our lives. 

Hope is a multifaceted human need that drives one to achieve or craft one’s life in a certain direction. More than a guide or roadmap for ourselves, our families, our friends and beyond, hope can influence the essence of very fundamental human behavior from birth to death.

There are many ways of examining the concept of hope as it applies to the cancer patient. At its very core, hope and the patient may be seen through the lens of the quality of life or lifestyle, a religious orientation and faith, and the belief in the human soul.

Hope can produce a quality of life which may be considered a lifestyle. That is, our daily behavior from birth onwards is built around a series of ideas, principles, concepts and other’s thoughts that from a belief system and ultimately organized as a lifestyle. While the concept of lifestyle is a complicated phenomenon, the idea of grouping the many forms of individual human behavior into a set of mostly observable behaviors can have, at its core, the idea of hope. Hope may well be the driving force as we traverse our way through life. And part of this is the idea that hope is an amazing gift from God which underlies the very essence of a positive quality of life or standard by which we live from birth to death.

In many organized religions, hope is part of the foundation of religious faith which is built around the omnipresent force commonly referred as the concept of God. And, as some religions have espoused, the human soul is the person’s window to God, which guides our thoughts and beliefs about our future, and ultimately to our understanding about the hereafter. Hope also helps to form three other aspects of human behavior.

These three beliefs are the belief in the human soul, belief in our own future, and finally, a belief in the hereafter. Aside from biological growth and development, the human being also learns, accepts, and inculcates into our being the beliefs in the human soul, our own future, and the hereafter forming our human core. Hope, then, becomes a primary vehicle for understanding human existence.

So, how do we make sense out of this? My own interest in this topic grew out of my volunteer work as a moderator for a digital support group for people with Blood Cancers.

This group is nationally supported by ANCAN, a cancer information organization. In my moderating work I was struck by the almost exclusive interest on the part of participants in medications they were taking, clinical trials they were participating in, details about their chemotherapy designs, and related topics.

Initially, I was shocked to listen to the conversation. As a psychologist, I had much more anticipated that discussion questions about, “What are you feeling? How are you coping? What is your family doing to help you? Are you ever angry about getting cancer? If so, how do you express yourself?” And to my professional amazement, these discussion points never came up and when asked if they were interested in talking about this, there was only some quiet grumbling.

The good news is that silence almost always works, so after a moment or two, one brave soul said, “you know, I always wanted to know what it will feel like when the “end” for me is near?”Understandably, this generated a good deal of healthy discussion. So, from a hope perspective perhaps what I call 

 organized in a way that is emotionally acceptable to the participants.

As mentioned earlier, hope can also be viewed as a form of quality of life or lifestyle in which some have built their style of living around the concept. Virtually everything they do involves some consideration of hope. One’s personal thinking about self, spouses, extended and close-in family, siblings, employers, friends and acquaintances, neighbors and virtually all others that we have contact with have hope woven into those relationships. Hope that it will remain the same, or that it will change for the better, or somehow be different. Hope is tightly woven into our very essence or being and is the principle upon which we judge and evaluate virtually all our thinking concerning the past, the present, and the future.

From a practical point of view, the concept of hope is difficult to understand, especially in the presence of catastrophic disease. Disease challenges us to live beyond the confines of the disease as we know it or come to understand it. One way of understanding this is to examine the emotional role of medications at the center of disease treatment, most especially cancer treatment. The principal advocates of this are first the practitioner who provides the diagnostic understanding of the disease and prescribes the medication to “fight” the disease.

And second are the patients who often develop an fixation around the current medication, the clinical research around new medications, and the overall effectiveness of both. What is interesting to note is this author’s own experience with his multiple oncology physicians wherein the regular monthly appointments are almost completely focused on the efficacy of the medications that fight the symptoms of the disease itself and the side-effects of the disease fighting medications. Only under a few rare circumstances have we have conversation about feelings, emotional coping strategies, and end-of-life expectations.

Hope is a complex concept that each of us has a multitude of thoughts about. Conceptually, hope may be characterized as a religious phenomenon involving the idea of God and eternal life. On the other hand, but clearly related, hope can be considered a common part of the human ego or the emotional and biological structure of the human person. Finally, while hope is thought to be a universal aspect of all persons, its parts and dimensions certainly have cultural components that differ for all human beings. How one defines hope is both individualistic and group or culturally determined.

Hope does not equal living per se. Some have the idea that if they go through life embracing hope that they are truly living. Yet, hope alone does not and could not define living.If all our ideas, actions, behaviors, thoughts, and the like are based solely on hope, then indeed we are deferring the present reality for the future which is, by definition, hope oriented. While living, meaning the past, present, and future, does contain elements of hope, it is the totality of the hope concept that is problematic as it could keep us from what is happening because we are focused only on hope elements for the future. It is a sort of childhood version of, “when I grow up, I’m going to be…”.Hope for the past, present, and future is necessary, but it is the totality of it that does not constitute living in and of itself.

As mentioned, hope feeds the soul with a sense of identity which enables the person to live beyond the current situation that individuals find themselves in. As humans, we are complex individuals who are relatedly close, but not a copy of one another. We are created with the idea of a soul or a sense of self that combines our past, present, and the future. This is best understood as a combination of behaviors, religious beliefs, thoughts, feelings, guidelines, cultural belief systems and the like that can structure how we think and behave. This is most especially the case as we contemplate future thoughts, wishes, desires, and behaviors. How our soul is developed will determine in part how we will behave in the future. And for many, our souls have an exceptionally large religious or spiritual component which serves to help guide us through all our days on Earth.

This is especially the case for those of us with a terminal illness whose end can and is predicted in terms of time-based sequences and levels of disease. The longer the time with the disease and its level provides a statistical determination of the average life span. Hence, the role of hope and its foundation in God becomes even more important to the cancer patient as one prepares for life hereafter. Perhaps the final and most significant statement about hope is the question about God being eternal life. As cancer patients and others face the probability of near death, the idea that God is about eternal life gathers increasing importance and meaning. As human beings facing imminent death, the idea of the hereafter takes on ever-increasing importance. And, for those of us raised with a concept of God as part of our intellect and being, at the very essence of hope then is an ever-strong belief that God is responsible for our hopeful belief in our daily existence and in the afterlife.

Hope is indeed a complex issue for all human beings to deal with. While this complexity applies to all human beings, it is particularly relevant to those whose illness or age is such that it is likely to be more imperative. Hope provides a livable statement about quality of life. As an alternative to the idea of hope as a pathway for disease-fighting, hope can provide a set of statements or directions to be followed for the living of a quality life. While the concrete approach determining a sort of mechanistic attitude is a normal human process, hope can be useful for conceptualizing a much broader approach to living. The dimensions of this are endless and usually involve other people, family, friends and perhaps even volunteering yourself to assisting others in need.

Even though cancer patients must follow a structured path of treatment for disease resolution, that path does not preclude additional elements which have a broader appeal and usefulness for the patient. In fact, an attitude of belief that the future may be pre-determined because of the disease, adding other dimensions like hope to one’s living can strengthen one’s approach and add richness to their quality living. 

To this end then, hope is a gift and becomes the essence of a quality of life issue for us. We surround ourselves with the idea that hope is a gift, and one which has been nurtured by ourselves over time and often nurtured by other people in our lives. We have been taught or otherwise learned that the idea of hope provides one of the principle ways to achieve happiness in life even within the context of catastrophic disease. As we move through our own individual stages of development, hope is a human quality that enables us to create opportunities for positivity and peace of heart.

Articles

Hope is a potent ally for the patient with cancer, and it is a response that helps inform a patient's journey with cancer.

Hope And The Patient With Cancer

As a new Assistant Professor of Criminal Justice, my teaching experiences quickly became devoted to helping students learn the facets and details of this relatively new academic discipline. As time went on, a psychology colleague of mine and myself created a model to help us and clients to better understand people's experiences, both working on the job and off. Called "The Health Cycle" it was designed to help people to comprehend the role that stress plays in their behavior and lives in general.

So, the idea or concept behind the Health Cycle is to help individuals to understand that all of us experience sources of stress which come as part of our daily living including family, friends, work colleagues, and our reactions to day-to-day living. These experiences can be both universal in that virtually all of us experience the same or similar things or highly unique often as a result of our own personalities. These experiences create a very wide range of feelings in us that force us to behave in ways which allow us to cope, understand, or eliminate the feelings or the sources. The important point here is to understand that the behaviors we choose have either negative or positive consequences to and for us as individuals or as members of one type of group or another.

Even though we may not have thought of it as such, all of us have participated in groups that could be considered as support groups. When we were younger, these groups were our friends, our teammates, fellow classmates, dorm roommates, co-workers and colleagues, spouses and families, children especially as we age, sports buddies, neighbors, clubs or other recreational groups and/or religious organizations that we belong to. The idea here is that all of us have connections with other people and that these connections are sources of information about how to act with good or bad consequences. Learning how to act given a particular set of circumstances is fundamental to our human experience. And as we all know, the "how to act" of our behavior can be an additional source of stressors. So, our current understanding of behavior may well suggest that we "learn" behaviors that have positive or negative consequences for us. The idea here is that we have to be very careful with the behaviors that we use to cope with various sources of stress. This is to suggest that all behaviors have consequences, good or bad, positive or negative that will help us to cope. What we must avoid are coping behaviors which in and of themselves can become additional sources of stress and for obvious reasons.

In general, there are both formal and informal support groups. Informal groups come from our associations with friends, colleagues, neighbors and the like. They just sort of happen because of our relationship with the individuals involved. Formal groups are deliberate and people join because they wish to meet others with the same or similar interests, issues or problems to solve. And, in the process of meeting and interacting, we learn how others may also be experiencing similar situations and how they use coping behaviors to deal with their experiences. This simply means that there is a "reason" that you are drawn to the particular set of individuals. Commonly, this reason is based on the purpose of the group's existence that we find attractive or the process of meeting that the group uses and you find it acceptable. Finally, the known or assumed outcome of group belongingness that we feel could work for us.

Having been diagnosed with multiple myeloma more than five years ago, I decided that one of the things that I could do to remain engaged and stay active and positive was to help others in a similar situation. As one of the coordinators of the Blood Cancers Virtual Support Group, I have once again been reminded of the power of being a member of a peer support group with a focused, shared experience. At the start, we are attracted to certain groups because of a particular purpose of that group. Unlike recreational, cultural, or neighborly groups, peer moderated support groups are almost always problem focused. That is to say, since we are experiencing a particular issue in our life, we seek out others who are also experiencing the same or similar problems. Thus, there is a sense of "mutuality" that draws us to one group or another. And this mutuality is how a group can provide support to its members since both moderators and participants share a similar experience and can readily learn from one another. What we have all seen is the commonality of the life-work experience which draws us to others because of the commonality of like experience or set of experiences.

You are strongly urged to look for a support group. This is based on the very simple idea that these groups are a very rich source of information about how others deal with the same or similar sources of stress that you are experiencing. This is to say that we have a lot to learn about our own current and future behavior by learning how others cope. As you look for a support group you need to pay attention to several principals. First, your potential support group should be regularly coming together addressing the same or very similar problem(s) that you are experiencing. Second, you should seek support from a group of individuals who are dealing with the same or similar sources of stress that you are experiencing.

While the overriding issue of cancer does bind all cancer patients together, the richness and utility of the support group that is specifically aimed at the problem one is encountering is best seen when members have as many details in common as possible, keeping in mind that diseases often express themselves differently to patients, caregivers, and families. The second and exceptionally important element of the support group is that the process of members supporting each other are doing so utilizing processes that are in and of themselves not problematic or do not run the risk of creating additional issues for you.

Helping with Support Groups 

My journey with cancer officially began on November 11, 2014. Unofficially it begins in the early fall of 2014 with my persistent complaining about a sore back. At the time I was a very healthy 63-year-old husband, father, grandfather, university professor and psychologist by profession who was currently serving as the President of the Maine College of Health Professions. Successful laminectomy surgery provided little to no relief for the ever increasing back pain. Referral to another orthopedic provider resulted in an urgent kyphoplasty surgery in an attempt to stop the cascade of vertebral compression fractures as apparent in the x-rays that were taken. A biopsy was also secured. Toward the end of the third postoperative day, I received an unexpected telephone call from my primary care physician.

The doctor asked to speak with both my spouse and I at the same time. As I put the phone on speaker, she gave me a terrifying look, the kind of which only a medical professional would give. She is a nurse— and knew right away that something was terribly wrong. I got scared deep down inside. After minimal small talk, he then said the reason for his call was that he had some difficult news to tell me regarding the biopsy results from a few days earlier.

He said that the lab results from the initial biopsy suggested that I had a cancer which turned out to be a relatively rare blood cancer called multiple myeloma. I would learn later that Multiple Myeloma was an incurable cancer with an average life span of about 5 years.

To say that the news of the diagnosis by our primary care physician was shocking is an understatement.

After we hung up the phone, we sat in our living room holding each other and cried uncontrollably. What the hell is multiple myeloma I screamed, I cried….it was not fair. I was in good shape: I exercise regularly, eat properly, and took good care of myself — damn it! This is not supposed to happen. As I continued to rage, my beloved spouse, Bonnie, took my hand and cradled me as I cried my heart out. She petted my hair as if I were a baby and told me that we'd get through it and get through it together. She reminded me that we were married then for 41 years and that we had faced our own sets of issues and crises as most married couples do. We had managed the usual and the unusual during our years together and that we will find the strength and courage to deal with this.

"Yes, this is bad and devastating," she said, "but we are a strong couple and we will get through this. I will be strong for you; you can lean on me." Later that evening, it was her turn to let her emotions out. She began wailing. I held her, rocked her, and told her that I loved her very much and that whatever was in store for us, we'd get through it. Finally, it was lights out and we both managed to fall asleep albeit a restless one. The next morning over coffee we both went to our iPads to learn about multiple myeloma and were shocked to read about this rather rare form of blood cancer. We discovered that "MM" resides in the red blood cells and which for a variety of reasons goes on an "attack" consuming other cells usually found in bone marrow. We looked at each other and with tears streaming down my face, I blurted out, "what in God's name are we going to say to the children and grandchildren, how are we going to tell them?" Knowing that we are a very, very close family, Bonnie came over to me and put her arms around me and offered comforting words about coping, being strong, praying to God for help, guidance and support.

I took a deep breath, gave her a good morning kiss and finished my coffee. Over time, we worked out a plan to talk with our children and eventually my brothers and sisters. Little did we know that much, much more was yet to come. Our primary care doctor referred us to Helen F. Ryan, MD, the noted Hematologic Oncologist at the New England Cancer Specialist in Portland, Maine for an appointment. At the same time that this appointment was being established, we were able to secure a second opinion oncologist of significant scientific repute with Jacob P. Laubach, MD, MPP the Clinical Director of the Jerome Lipper Multiple Myeloma Center at the Dana Farber Cancer Institute in Boston.

Visits to each oncologist confirmed the diagnosis and we began the journey of chemotherapy and pain management. And, because my spine was crumbling and a further bone marrow biopsy took place, an aggressive regime of chemotherapy coupled with pain control was initiated. Through all those tumultuous initial days of tests, assessments, treatments, my back pain continued to worsen — much of the time with a pain level of 11+ within a 1-10 scale. Pain medication helped only for a very short while. Stronger pain meds were continually ordered without much improvement. Bonnie told the doctors that the pain was killing me, and it was.

A pain pump was installed, and it finally controlled the pain. I remained in a significant compromised and diminished state for many months. I would later learn that my spine lost 50% of its vertebral height resulting in 5 inches of lost height and weight loss of approximately 50 lbs. within this short period of time. Bonnie is a unique, strong and loving spouse who was committed to helping me manage the cancer. Her lifelong experiences as a registered nurse, with a PhD in nursing, and now retired Professor of Nursing at the University of Southern Maine, continues to positively influence my care and quality of life. She was determined that this potentially fatal news was not going to destroy us. How Bonnie managed to support me realizing that I stood a good chance of dying and leaving her as a widow, I'll never know. But that is the type of person that she is. She is a pillar of strength to me and ultimately to the children and family members, always providing the needed support when someone was in crisis over my disease. I am confident that she brought these same qualities to her patients, families, and nursing students.

Unbelievably, within two months of my MM diagnosis and during a routine physical and mammogram, Bonnie was diagnosed with breast cancer that required surgery, radiation, and long term medication. And, I should point out that during that same month of January 2015, I was hospitalized three times for extended periods of time for pain management and pneumonia. This left me with little or no appreciation for the heartbreaking trauma she was experiencing. While we kissed and I held her, the full comprehension of what she was experiencing was beyond my ability to comfort her and provide "care" that would have readily happened under normal circumstances.

So here we are— a family with both husband and spouse with cancer. The husband has been largely ineffective in providing any real support to his spouse. With vigilant screenings for breast cancer, Bonnie's prognosis is optimistic. However, knowing deep down inside that she has or has had breast cancer has created an aspect of her self-concept that now includes the concept that, like millions of other women, she too has had cancer. This knowledge, while clearly present, is now a permanent aspect of her self-concept and personality. And as her husband, and a psychologist to boot, I am too clearly knowledgeable that there is little I can do to help her alleviate any negative feelings that are associated with it. Although she has often expressed that she does not feel like a breast cancer survivor, I know different.

Now after 46 years of marriage, we are a caring, loving and committed couple. We live by a daily code of faith in God, and belief that a positive attitude will help us to survive and live a positive life for however long we have. We remain committed to one another, we believe in one another, and we deeply love one another. And in the end, we know with certainty that we'll be together for as long as we can and forever afterward. Cancer is a complicated disease. It certainly has a distinct physical aspect that runs a gamut from invisible pain to gross disfiguration depending on the type of cancer one has. Our ability to cope balances a deep-rooted change in our lives, always fearing that many people die an early death from it. Too, physical changes like strength, balance, and stamina can readily affect our daily living. And, at the purely psychological level, we learn that we are somehow different than others because we have this disease in our body and acceptance of a changed self-concept can be psychically painful for many.

There are many faces to cancer. These faces run a marathon of feelings - from sadness, fear, joy, belief, and faith to a myriad of other dynamics. Just the idea of having a disease in our body can, for some, cause a sense of disruption to our self-concept. And certainly, for all cancer patients and their families, a change takes place in our psyche that hopefully provides the opportunity for the expression of courage, gratitude, and positivity. For me as both a husband and a man, Bonnie's cancer has deeply challenged every aspect of my perceived role as provider, protector, and defender. She is my wife and I swore in our marriage vows that I'd love and honor her and take care of her as we grew together. And largely as our lives progressed, I was able to put real meaning and action behind those words of love, honor, and caring for her needs, as well as the needs of our children. Deep down inside of my psyche, multiple myeloma has basically changed some or much of this for me. Coming to terms with the many physical and psychological effects of this disease has caused me to reassess and 

 many, if not most, of my belief systems as a man, husband and father.

We pray daily asking God to give us the strength to choose to be positive. And while bad things happen to people, my spouse reminds me daily of the power of positive thinking which provides the basis for living a meaningful life of love, gratitude, and blessings.

Richard E. Farmer

Hope And The Patient With Cancer

Helping with Support Groups

Reflections On The Journey of Cancer and Marriage

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