Jan 23, 2009 - 4:28 pm
IDEAS ON DEALING WITH CANCER
Over the past two years several of my colleagues and friends have suggested that I write out some ideas or suggestions on how to deal with, handle, and/or cope with cancer. The reasoning behind this was as follows: firstly) I have been diagnosed with oral cancer, gone through months of chemotherapy, radiation treatment, and now am receiving pain management through Hospice care since my condition is terminal and further treatment is unrealistic; secondly) I have over twenty five years of mental health education, training, and experience; thirdly) I have dealt with my illness without a religious affiliation; and, lastly) they have felt that I have handled my situation and prognosis better than others they have known.
I have taken their advice and have chosen to include some ideas and interventions that I have used in the hope that they may be of some usefulness and help to others. Please let me be very clear: these are not suggestions that will help everyone, they are not suggestions that supersede other ideas or suggestions, and in no way do I mean to imply or suggest that I know what is right, best, or what will somehow magically make your life, condition or situation better! These are merely beliefs, interventions, and observations that I have personally experienced either first hand or through helping others that CAN WORK. Too often people find something that works for them and they try to extrapolate these to others (if not everybody!) They feel that since it has helped them then it must be able to help everybody. Let me also be clear about the parameters and content of these suggestions. I do not address the value or interventions related to exercise, diet and nutrition, different cancer treatments or therapies, ways to enhance one’s appearance (often related to the changes in one’s appearance due to chemotherapy, surgery and/or radiation treatments), or spiritual well being. I defer to the writings of others much more knowledgeable in these areas than I. My ideas and suggestions relate to the social and emotional aspects of cancer and the inter-relationships and dynamics both interpersonal and intra-personal. This is the area I have more knowledge and expertise.
Let me tell you a little bit about my illness. I began to be symptomatic the end of 2004, but the symptoms were mild and basically consisted of limitations in my ability to open my jaw. There was no pain, and no noticeable lumps, so I ignored this minor inconvenience until I saw a dentist for a toothache. I mentioned this problem to the dentist and he X-RAYed the area, and since there was evidence that my jaw bone was rubbing against my skull bone this was the diagnosis. He referred me to an oral surgeon, for help with arthritis of the skull. Since my HMO did not pay well for this type of treatment I was transferred to several oral surgeons who each claimed the procedure that would be needed (it changed several times) was not something THEY did, so I would have to see another specialist. Finally, in April of 2006 (by which time the pain had become intense) another oral surgeon was trying to pass me off when I started crying in his office. He agreed to examine me and this led to his suspecting cancer, but he did not say so. He had me see an ENT colleague of his in the same building who sent me for a CT scan, then a biopsy. The results were cancer which then justified having a PET scan. By then the cancer had spread throughout my jaw, neck muscles, and lymph nodes. The prognosis was not good. Over the next seven months I had multiple rounds of chemotherapy (the most extreme type and dosages because I was told if I didn’t go for the “big guns” I had no chance of survival.) This resulted in my being hospitalized four times that summer (once in isolation because my white blood count was so low.) I had to have most of my teeth extracted (radiation causes problems with teeth left in the region treated.) Then I had thirty-five daily radiation treatments. I lost my ability too talk, had a feeding tube inserted in my chest so I could have nourishments the months I could not swallow anything, and I lived on pain medication for months. Many times I thought about giving up because truly the treatments were worst than the disease.
Nevertheless I continued to follow the advice and directions of the oncologists, and by the end of 2006 I was no longer receiving treatment and my December PET scan was negative. I returned to work in January of 2007, and was happy to be able to function relatively pain free for the next six months. In June I had another PET scan which was negative and my wife and I were thrilled. Two negative PET scans; maybe I had beaten this! The next month during a routine follow up exam with the ENT who had diagnosed my cancer the previous year, I mentioned a lump in my lip which he doubted was cancer. He felt it was just some residual damage from all the treatments last year. He decided to biopsy it anyway. Days later he called to say it was cancer, and since it was back so soon the likelihood of further treatment or remission was poor. I saw my previous oncologist who suggested more localized radiation, and an alternative chemotherapy treatment, with follow up consults at Georgetown University Cancer Center. Essentially Georgetown had no suggestions and gave even a more pessimistic prognosis than the ENT or oncologists had. I agreed to undergo the additional chemotherapy and radiation treatments, but before I could even finish these treatments more tumors were found in my mouth. It was clear treatment was not going to help. I was told I was terminal and pain management was the only option. I continued to work while taking the pain medication at night and on the weekends, but this got to be too difficult. I finally resigned from work and am trying to enjoy the time I have left with my family and friends. This brings me up to the moment.
Too often people speak of their experiences as a way of eliciting creditability. They talk about how they have lost a child, they have survived a hurricane, they have come out of a coma, as if everyone who has experienced these suffered the same. People want to believe that since they have experienced or dealt with a painful, devastating event then they KNOW what everybody else who has gone through a similar event experienced or felt. This is a falsehood. Each and every one of us experiences and feels pain and situations differently and to think that all persons suffering from cancer or rape, or having been burglarized, or having had their home flooded, would have the same reactions and feelings is ludicrous. Sure, nearly all people would experience fear, anxiety, pain, frustration, anger, hurt, sadness, loss, confusion, etc, but each of these emotions has a myriad of variations. No one can tell another “I KNOW HOW YOU MUST BE FEELING!” Certainly I can tell the mother whose child has been killed “This must be very hard for you.” But none can truly know how what that person is feeling. I speak of my experiences and situations merely to help explain that I have undergone some of the pain, fear, loss, anger, confusion, depression, loss, that others have endured. Not to say for a moment that “I KNOW HOW ANYONE ELSE FEELS!” This is why I say that some of these ideas may be helpful. Certainly I cannot claim to know what will help, since I cannot know what anyone else is experiencing. Having said that I will share what I have found to be helpful TO ME!
I would like to focus this paper of the four prominent emotions we as human beings experience throughout our lives: fear (anxiety, worry); sadness; anger (disappointment, frustration, confusion, irritation, depression, etc.); and, joy (pleasure, happiness, comfort.) Clearly there are a plethora of other emotions that we experience, but I have found these four predominate most of our lives. When dealing with cancer it is important to allow ourselves to acknowledge all of these emotions, and to be able to identify them and connect them to the situation that elicited them (rather than what we think is the reason), and to find ways to express and handle these emotions in the best ways we can.
Fear is probably the first and most powerful emotions any of us have upon hearing the dreaded diagnosis: CANCER! We cringe over that simple two syllable word. The first thoughts in our minds are death, loss, pain, disability, despair, financial devastation (even if we have good medical insurance), and loss! How am I going to get through this? How is my family going to get through this? What is going to happen if I DON’T get through this? Who is going to pay for this? The thoughts, fears, and worries initially overwhelm many of us. I have been a practicing Social Worker for 25 years and I had to realize I had little knowledge or understanding of what social support systems there were for people like me with cancer. I cannot imagine the confusion and difficulties the typical citizen must face in trying to navigate and locate services in the community. With fear comes loss and the losses includes: health, physical and mental abilities, employment and financial security, pride, confidence, sexuality, one’s future, one’s family, and even death! Although the American Cancer Society tries to convince the population that cancer is no longer a death sentence the truth is many of us will die of cancer, and although we are merely a fraction of those diagnosed with it, it still remains a reality that rears its ugly and terrifying head. Do not be afraid to admit you are afraid. Fear is intrinsic in any new or stressful situation and the simple fact that you are afraid means one thing: you are HUMAN! What and how you deal with fear makes the difference. Fear can immobilize and devastate you or it can be used to sharpen you senses, hone your mental abilities, and focus your energies. Fear can actually be helpful in dealing with cancer. You know IT is a danger to you, and now you have to act in whatever means available to protect yourself and your loved ones!
I would like to address some thoughts about sadness here, but I will speak more about it later in this paper when I deal with Depression. Sadness is the human body’s way of dealing with loss. Once we have acknowledged that we are dealing with loss, we inevitably feel sad. Do not avoid or run away from this emotion. Allow yourself to deal with the sorrow, loss, hurt, pain, grief, and fear. We allow ourselves to cry at the end of the movie “Old Yeller”, but think we are supposed to keep “a stiff upper lip” when informed we have cancer. Cancer is a threat to our mental and physical abilities and therefore warrants the same consideration as a dying family pet. Allow yourself to be sad, allow yourself to be comforted by others, allow yourself to be consoled. Do not put up this strong, proud, defiant and determined persona that you can handle this, you aren’t worried, you accept the inevitably of the situation (especially since there is seldom a clear inevitability with cancer at the outset), or that “It is God’s will!” Most religions espouse that God has some reason for his/her actions, but they also encourage the person to take prudent and realistic action rather than blithe fully waiting to “meet their maker.” Many people avoid being seen as sad because they believe this will elicit “PITY!” They see pity as a sign of weakness and vulnerability. If people see me sad, they will either use this against me, or they will pity me. And their pride will not allow them to endure pity. None of us is so powerful and capable that we cannot benefit from help, support, guidance and even love. Pity can be seen as belittling and infantilizing, but it usually is meant as the other person’s way of saying “I’m here to help, I just don’t know how!” Instead of pushing them away, educate them. If they care about you they will listen and learn, if they don’t then you have to make a decision; is my pride more important than my life and the future of my loved ones? The more time and energy we spend trying to stay proud and invincible is time and energy we take away from the really important aspects of our lives.
I would like to talk about the stages of grief which will include discussions on anger, acceptance and eventually how to bring some joy into your life. When dealing with cancer or any major grief reaction most go through the five stages of grief as posited by Elisabeth Kübler-Ross (On Death and Dying) which includes: Denial, Anger, Bargaining, Depression and Acceptance. For many Denial is the easiest. We simply try to convince ourselves that the loss or situation is not true or real. The doctor made a mistake or the tests were in error. The prognosis can improve. I’m too young (or healthy, good, needed, moral, generous, etc.) for this to be happening to. We find as many possibilities as we can to allow ourselves to not face the reality of the situation. Denial is our way of protecting ourselves from the pain and anxiety of facing the truth. Even after we acknowledge and realize that the loss is real (the cancer is in fact there) we episodically slip back in to the fantasy that it is not as bad as it is, we can live longer than predicted, etc. There will be a remarkable miracle cure that will save me (i.e. the hero in the movie being rescued seconds before being shot or blown up.) Denial is a core ego defense mechanism that we all possess, all use, and is totally necessary at times. Denial is not wrong or bad. It can however be unhealthy and dealing with cancer in the healthiest manner possible is what I am trying to encourage.
The second stage is Anger. Anger again is a natural, healthy and necessary emotion and we all live with anger at times in our lives. Getting angry is useful since it allows us to admit to ourselves how hurt, scared, disappointed, and confused we are. Acknowledging and expressing our feelings is healthy and valuable, and avoiding or ignoring our feelings is counterproductive and harmful. The problems with anger are twofold. The first is how we express our anger: verbal and physical aggression is clearly unwarranted, unproductive and potentially illegal. The second is by holding onto grudges and resentments. Anger has value and purpose, whereas holding onto anger is an incredible waste of time and energy. People often say that they do not want to let go of their anger, resentment and grudges because they do not want to let the other person (the injurer) off so easily. They convince themselves that as long as they hold onto their anger and resentments then they are somehow “punishing” the person(s) (or with cancer patients the disease itself), who has hurt them. They do not want to let go of the hurt and anger because they see this as both a way of punishing the injurer and a way of protecting themselves from future hurt. The former is folly while the latter has some value, but is not as productive as other efforts.
The idea that holding onto my anger over some transgression another has done to me or that I can rail against some cellular mutation, presupposes that they (or the disease) are aware they have slighted me, that they remember they did this, that they care what they did was wrong or hurtful, and lastly, that they feel guilt over their actions. In most cases (and clearly with cancer or any other disease) one, two, three, or all four of these presumptions are erroneous. An example of a resentment is: “The driver who cuts me off on the highway and makes me swerve to avoid an accident”, and who I am raging and railing against all the way home from work, all through dinner, all evening long and halfway through the night, is likely the same driver who went home, enjoyed dinner with his family and kids, watched TV, made love to his wife, and slept sound. I can be angry and resentful, but is that really punishing him or me? I can be angry that I am suffering from this life ending and painful disease, but how does being angry at a disease improve my life or protect me. If anything the more energy I spend being angry the more likely I am to weaken my immune system, more likely to impact my appetite and sleep patterns, and the more likely I am to impact my gastro-intestinal system. All of which hurts me, not the cancer.
When it comes to dealing with anger interpersonally I can stay angry at several human outlets if I choose. I can be angry that the government for not having spent enough money on cancer research rather than spending the money on other projects. I can be angry at my insurance company for not providing better benefits which would have possibly led to earlier detection. I could be angry at the numerous medical professionals who failed to diagnose my condition accurately rather than trying to avoid having to treat somebody who would provide less financial return to them. I could be angry at the doctors for NOT CURING ME and letting me die. If I choose to I can spend every minute of every day being angry, but I realize every minute I spend being angry is one minute I have less to love. I realize I cannot change the past and the situations that have occurred (rightly or wrongly) are history. I will die, and I would rather live out my days loving, caring, and sharing than being angry, spiteful and resentful.
This does not mean to say that I would never get angry or resentful to another who had done a terrible wrong to me or my loved ones. But most of us do not hold anger and grudges over the death of our child, we hold grudges over being cut in front of in line at the Post Office. While leading a group therapy session with adults one of the members shared how angry he was. Harry was a depressed, 38 year old man who had been coming to group therapy for several weeks. As my practice I asked the members how their weekend had been and how they were feeling today. Harry proceeded to berate his brother for taking and wrecking his “bike”, and he continued with his angry report for over ten minutes. His description of this violation of his trust and destruction of his property was made in a highly animated, intense and pressured voice, sweat producing gestures, and clenched fisted tirade until one of the other members asked in a puzzled manner when did this motorcycle stealing event occur: He answered in a clear and sincere manner, “When I was 12!” The jaws of nearly everybody in the group dropped. They realized that his “bike” was in fact a Schwinn bicycle, and what we thought had happened over the weekend had occurred a quarter of a century before. All of us thought this residual rage was unnecessary, unwarranted, and outright ludicrous, but for Harry he remembered it as if it had happened that morning. He was incensed over the actions of his then 10 year old brother, and even though decades had past, it was not “over” for him. This exemplifies how many of us cling to our resentments and grudges even when most would have “moved on.”
When I speak of anger I do not mean to say that anger is by its very nature “BAD” or “WRONG.” Many of us were taught at an early age that anger is a sin, something malevolent, evil, and not to be allowed. “BAD” people get angry. “Good” people do not. Good people have love and joy in their hearts and minds, and if you are angry you must be evil, sinful, or bad. The truth is that anger is a part of the human gamut of emotions. We have anger, fear, hate, love, guilt, shame, embarrassment, and a plethora of other emotions. These are a part of what makes us human; and GOOD! Feeling anger is not wrong. It is a natural response and reaction to events in our lives. Denying that we get angry is unhealthy and counter-productive. All this does is repress the feeling and eventually the emotion will express itself later, usually in an inappropriate and conflictual way. There is a difference between compartmentalizing one’s anger and repressing it. An example of compartmentalizing your anger would be when you get censured by your boss for an error at work realizing that expressing your anger with him/her may be ill advised so sometimes we set aside our anger until we can express it later in a more acceptable setting (e.g. talking it over with your friends after work and complaining about your boss, or taking out your frustrations at the gym.) Repression (and displacement) leads to holding in your anger and dissatisfaction with your supervisor then coming home and yelling at your child for a minor household rule infraction. A situation where the child is left feeling confused and the parent typically is left feeling guilty. The point is to acknowledge you are angry. Accept that “GOOD” people get angry too, the issue is not whether we get angry, but what we do with it and how long we hold onto it. The first is to look at how we express our anger. Clearly verbal and physical aggression to self and others is not acceptable nor is substance abuse, or other addictive behaviors. Talking about your feelings, exercise, relaxation techniques, etc. are the preferred ways of handling your anger. The other aspect is not to embrace your anger and turn it into a long standing resentment which as already stated is harmful, counterproductive and futile. Learning how to manage and handle our anger is the key, convincing ourselves that we NEVER GET ANGRY is the mistake!
The next stage is Bargaining. This is where we offer God, the Doctors, Fate, Authority figures, Ancestors, etc, to change and modify our behavior and life style if the current situation could be changed or avoided. The classic example being our promise to give up drinking, smoking, infidelity, gambling, etc., if God would only let our sick child be healthy again. We look for ways to persuade Fate to change the reality of the situation because we cannot accept the reality of it. The need to control and change the situation is our goal. We tend to aggrandize our worth and importance by deluding ourselves that God or Fate will be moved by OUR willingness to change. We are so important and powerful that we can literally bargain our ways into getting what we want (health again.) We cannot abide the truth that whatever we do or change will not impact or affect the situation. (Obviously giving up smoking after you have been diagnosed with emphysema will probably help, but giving up drinking is not going to change your daughter’s diagnosis of Cystic Fibrosis.)
The fourth Stage is Depression. This is where we start to realize that we have little if any control or sway over our situation, and the anger we were feeling earlier is not going to leave. We cannot manipulate or control the reality of the situation through bargaining, and nothing we do will make any real difference. This is when we start to feel depressed.
Depression arises from a multitude of sources (or it may have no identifiable source at all.) Depression can last for days, months, years, or a lifetime without a break. Depression is UN-healthy and can lead to additional physical problems, emotional problems, mental illness and even death (sadness by itself leads to none of these.) Sadness hurts, but it cannot cause the devastating damage that depression can. For many of us after we experience a loss, we begin to feel sad, and then we begin to hurt. This part is natural and healthy. But because many of us do not like the hurt, pain, and misery that accompanies sadness we tend to get irritated, frustrated, disappointed, confused, self abasing (how could I let that person/situation get to me so much), which leads to being angry which leads to feeling DEPRESSED!
The problems are that once we have shifted the pain from sadness to depression we have transferred what was a natural, healthy and productive grieving process to an un-healthy, destructive and unproductive emotional and mental health problem. The pain is just as bad, but now the depression can last for much longer, can cause physical ailments, and what could have been a healthy process is now a potentially insidious and devastating sickness. Sadness can become depression (through the addition of anger), but depression cannot turn into sadness. Obviously if you are depressed and suffer another loss you can compound your depression with a new sadness, but the original loss will not go from sadness to depression back to simple sadness.
Depression is actually as dangerous and potentially life threatening as the cancer itself. Often when people are diagnosed with cancer they have fleeting thoughts of “why should I put myself through all this (treatment and pain)? Why not just end my life and save myself all the pain and misery. For many of us those thoughts of dying occur not at the outset but after months of intensely painful and debilitating treatments; times when we find sitting in a chair and watching TV too exhausting and painful to bear. For those like me that is when the idea of ending my life became more apparent. Fortunately I pushed through the pain of those six months and had nearly a year of relatively pain free life (before the return of the cancer and the determination it was terminal.) But whether you have thoughts of dying at the outset, along the way, or after being told you are terminal, all I can say is take two very clear steps. Firstly, speak at length with a competent mental health professional (they are available through your phone book, hospital, social services agency, hot line, police department, fire department, etc.) Someone, somewhere, can give you a phone number to call. Price is not the issue, your life is. Remember it is not a crime to think about dying! It is not allowed to try or complete a suicide, but do not feel ashamed or reluctant to tell someone you are having thoughts or urges. Secondly, remember that suicide is permanent! Once you kill yourself you can never reverse the decision. If you die and then decide that your decision was wrong, you cannot “UNRING THE BELL!” Suicide is not a decision to be made whimsically, capriciously, or in haste! I am not going to tell someone in their last stages of terminal cancer what they can or SHOULD do, but I am going to say to talk at length with someone skilled in this area before making this decision, and remember once you complete a suicide you can never change your mind!
Too often feeling overly stressed and overwhelmed is the foundation for suicidal thoughts. Genuinely wanting to die is not the goal. The goal is to minimize or alleviate the pressures and stressors that you are experiencing. If the level of stress could be reduced the inclination to die would abate. When we feel out of control, overwhelmed and helpless suicide becomes more readily apparent. Once we begin to feel more stable, in control and/or manageable the feelings of helplessness and hopelessness diminishes. People find change stressful. This is inherent in having to re-order and rearrange the patterns of our lives. The diagnosis of cancer is an enormous change and it usually impacts every aspect of our lives so once we begin to have to deal with cancer, we have to deal with change and stress in a myriad of ways. Most of us have a comfort zone where we can handle or manage a certain number of problems or stressors in any given day. Some of us have relatively low thresholds of stress (5 – 10) some of the multi-tasking Type A personalities can handle 50 or more. The number is not important in comparing one’s level of happiness or health. It simply is used to help explain our comfort zone. When the number of stressors in our lives becomes significantly higher than we are comfortable with due to: cancer, family illness, financial constraints, starting college, relocating to another city, addition of another member to the family, natural disaster, etc. we get overwhelmed, “stressed out”, and can react by seeking help from others to help alleviate the pressure on ourselves, tabling some of the issues (if possible), taking a break from college, or other coping mechanism in the quest to lower the number of stressors to get us back (or close) to the upper level of our comfort zone.
Contrary, if the number of stressors in our lives gets too low (e.g. empty nest syndrome, retirement from our career, our daily tasks become so routine as to be described as boring), then we try to find ways to add stress and problems to our lives. As odd as this may sound we actively seek out stressors to raise the number of stressors back to our comfort zone. This is done by returning to work or volunteer work after retirement, going to college or graduate school, taking up a new hobby, going to night school, becoming a mentor, finding ways to fulfill and enrich our lives, but also adding more stress to it so that we return to our previous comfort zone. In these cases we use change to help make our lives easier, better, and more enjoyable. Change is life and to try and avoid it is wasteful and unproductive. I do not mean to say that we should look at change as something inherently positive or rewarding (it seldom FEELS that way), but it is with us, will forever be with us, and learning to accept this and work with it, rather than railing against it, is much more productive, rewarding, and useful.
The final stage is Acceptance. This is by far the hardest stage for most of us. The reason(s) acceptance is so hard is that many of us were raised thinking that if we work hard we will get (earn) good things. We were taught that if we put forth hard work that we could fix or solve whatever problems befall us. If we lose our job, get retrained and find another job. If our marriage fails, get out there and look for another “fish in the sea!” If we don’t like the way we look go to a spa or gym, or plastic surgeon, and we can look any way we want. The world is our oyster and if we are good, hardworking, smart, strong and dutiful we can have anything we want, fix anything we do not like, and we can not be beat! Hope springs eternal!
When I was told the prognosis of my disease was poor, but with treatment I might live a year of two I clung to the possibility that I could live those two years and did whatever realistically I could to get that time. I wanted to cling to HOPE and I wanted to live. I loved my wife, my family, my job, my clients and coworkers, my pets, my LIFE! I wanted to do whatever I could. For the past seven months numerous experts in the field have told me there is nothing else realistic I could do (Mexico still has Laetrile though)! My cancer will spread and kill me in the next few weeks or months. My wife and I are accepting this reality. We are not happy, content, pleased, or placated over this reality, merely that we know it will happen soon and want to enjoy and love every day and chance we have. We are accepting my death.
The problems I have are friends, family and casual acquaintances who do not want to accept my mortality. They hear I have terminal cancer and they want to jump in with ideas, suggestions, referrals to doctors that have helped people they know, etc. When I tell them I have accepted my impending death they want to convince me otherwise. They have not dealt with their acceptance of my death so they do not want me to accept it either. I have learned to be more assertive and blunt with people lately. I explain that their need to rescue me is actually causing me hardships. If they would allow me to deal with my situation, this would be appreciated; quit trying to instill hope because this is easier
Acceptance means more to living happily than simply in the context of Kubler-Ross’s Five Stages of Death. I have focused on the value of accepting Life on Life’s Terms in my own life and therapeutic practice for decades. The core idea is that we tend to not like the world or our situation, and if we try hard enough, get angry enough, hold enough resentments and grudges long enough then we can inherently change the world to please our needs. I have tried to live by the philosophy that the world is the way it is. Certainly I can change small parts of it, but for the most part I have very little impact or ability to change people, situations, life or the world. The goal is not to change the world but to find a way to life happily within it.
A huge part of acceptance is learning to appreciate what we have, rather than focusing on what we want or think we need. This is probably the biggest factor in whether we can be happy or unhappy. Self preservation and survival requires that we have core needs met: food, water, air, shelter, medical care, temperate climes or clothing, safety and security. But most of us seek much more than what we need. We seek, nay demand, what we think will make us happy. If I have more, newer, bigger, flashier, more modern, fancier, things, then by definition I will be happy or at least happier. We as a whole look to material goods, financial status, social status, and accumulated wealth as external ways of proving
When I was diagnosed with cancer I shared this with all of my coworkers and clients. I choose to share with them the truth of what was happening to me for two primary reasons. Firstly it removed the fantasy of why I was missing work (and eventually ended up taking several months leave), and secondly, it helped them look at what their priorities were in life. So many of us focus energy on inconsequential priorities. The same day I was to share my diagnosis with my clients a twelve year old client came in to see me. He started right off with how life and his parents were being UNFAIR to him. They had bought a game playing device for his brother for his birthday that week, but had not bought him the same game device for his birthday a few months before. He was livid. His life was rife with injustice and unfairness. He wanted to solicit my support in chastising his parents for their obvious crime against him. I listened for fifteen minutes then shared how I did need to bring his parents in to discuss something with them. I shared with the parents and client how I had cancer and would be unable to see them for a while and could transfer the case to a colleague if they wished. The moment I mentioned I had cancer the boy’s jaw dropped. He suddenly realized that all of his fussing over some TOY was incredibly petty in light of my announcement. This was my way of helping him look at his priorities and values.
Many of my clients, friends, and family tried to shower me with pity, sympathy, hope, and prayers. They want me to cling to the hope that “I will beat this!” They want to help me feel secure in that I will get more time and be healthy again. I appreciated this, but once I accepted that I would not beat this, that I was terminal and I was going to die (fairly soon) I tried to help all my friends and loved ones understand how grateful I was for the wonderful years I have been given. I prefer to reflect on the wonderful opportunities, joy, and love I have had. Would I want more: Of Course! Do I appreciate what I have been given: Of Course! The point is to look at what I/you have and appreciate and be grateful for that, rather than fixate on what more you want or could have had. Anybody could have more, longer, better, but just as easily we could have had less, shorter, worse. Life is not about bemoaning what you COULD HAVE HAD, it is about BEING GRATEFUL AND THANKFUL FOR WHAT YOU DO HAVE! Focus less on complaining and more on being grateful.
An example of this was when I was working with two brothers; ages 8 and 10 years old. I had spent the session working with the brothers and the parents in family therapy and towards the end of the session wanted to reward the boys for their behavior by asking the parents if I could give them some candy. The parents approved so I gave each boy a Hershey’s Kisses candy in their hand. Immediately both boys smiled and were pleased. Then I gave the younger boy a second piece. The older brother eagerly awaited his second piece. When I told him I was not giving him a second piece he immediately became sour, hurt, annoyed, irritated, disappointed and then angry. I commented on how a moment before he had a piece of candy in his hand and was happy. The candy was still in his hand, but now he was irritable and unhappy. The only thing that had changed was his brother now had two pieces. I helped him see that he could not enjoy the candy he had, or other aspects in his life because he was focused and fixated on having as much (or more) than his brother or others around him. As long as he dwelled on parity or “FAIRNESS” he would never be happy because seldom is life “fair.”
I refer to FAIR as a “four letter F word that I will not allow people to use around me!” I do not allow people to use the word “fair” because inevitably people cannot use fair without digressing into the use of the words “unfair” or “not fair”; moreover, when I ask people to define the word “fair’ they are invariably unable to do so (other than a reference to the “county fair” with pies, cotton candy and pot bellied pigs.) Everybody seems to know what “fair” means, but nobody can explain or define it. Essentially fair is when it meets my needs and desires, and unfair is when it does not. Fairness seems to be the catchword that people use when they cannot justify or explain their displeasure in some situation or decision. If they could explain how or why a choice or decision was detrimental, counter productive, immoral, unjust, or just downright wrong they would. When they cannot they resort to terms like “fair” or “unfair.”
I talk about accepting life on life’s terms because too often we expect life to be what we want it to be rather than what it is. I often ask my clients which of these statements is true: 1) Life is Fair, 2) Life is Unfair. Regardless of their answer the fact is neither is true. Life is Life, and fair has nothing to do with it. As I have said earlier, “Fair” is a mental construct we use to justify and rationalize what we want and why it is right and proper for us to want it. When we are denied something we can justify our disappointment (anger) by decrying “IT IS UNFAIR!” The reality is that life is what it is. When I was told my cancer was terminal and I would be dying in the not too distant future, many of my clients, friends, and family members shared how “UNFAIR” this was. They could not understand how someone who dedicates their life to helping others, who tries to make other’s lives better, would be dying when child molesters and criminals get to live out their days in health.
I tried to explain to my clients that life is what it is. Is it “Fair” that a six year old who has never hurt another be abused, tortured, killed, or die of some incurable illness, while a confessed murderer gets released due to insufficient evidence? Is it Fair that a young adult on their way to college, their wedding, the birth of their child gets run over by some driver under the influence? Is it fair a couple who have worked hard all their life to make their farm turn a profit be wiped out by a flood or drought? If you are looking for “fairness” then you will only find disappointment, frustration and anger.
Learning to ask before offering support is the key here. Let the patient know that you are available (but only if you are, do not offer support and then resent them for accepting and availing themselves of it when you were not sincere about the offer in the first place.) Offer to be there for support, to listen, to provide financial support, or whatever you are willing to offer, and then step back until they make the request. People tend to want to help, but in the process of wanting to help they intrude and place extra burdens upon their friends and loved ones. You see this when a person is struggling with health or financial problems. Friends and family members want to “fix” the situation, when they need to let the patient make the request first. Allowing them to ask affords them maturity and respect. “FIXING” the problem without their request infantilizes, disrespects, and demeans the person. The other concern people need to realize when dealing with someone in emotional and/or physical pain is: Do not tell them you know how they are feeling! You DO NOT! You can hurt for them, you can empathize with them, you know what pain feels like, you know it must hurt them, but you CANNOT know what they are feeling, and to tell them this often enrages them and belittles their pain. Let them know you can see they are in pain (it usually is obvious.) Tell them how you hurt (or are sad) over their loss, pain, suffering, etc. But do not assume you know how they are feeling. Pain is not transferable from one person to another.
People dealing with cancer often begin to feel that cancer has become their only identity. On an episode of the TV show “HOUSE” the star was assumed to have cancer, but had not told any of his friends, colleagues or coworkers. When one asked the other “Why hasn’t he told anybody, the coworker (an oncologist) says “because he doesn’t want every conversation to focus on his cancer.” Once you are identified as a “cancer patient” people often see you in this role predominantly, if not exclusively. This is why it is very useful to maintain a normalized existence for your self as much as possible. Clearly you will undergo changes in your appearance, energy level, physical abilities, decreased cognition, more fatigue, etc. You may have to stop working to go to the hospital or for treatments, or because of pain medications, or the need to be available for treatments. Keeping you previous lifestyle will likely be unrealistic, but try to maintain as much of your life style as possible. Stay as busy as you can. It allows you to feel YOURSELF, rather than a PATIENT! If you cannot keep working, find a new hobby, interest, outlet, or past time. I have begun to watch TV shows I never thought I would find interesting (because they come on in the morning and I cannot rise from bed for several hours after wakening.) I had to stop working because my pain medications precluded my ability to perform gainful employment, but I started writing as something I could do when I felt more lucid and coherent. I have tried to keep up with my household chores as best I can although forsaking my driving license due to safety reasons limits my ability to take care of many of my usual tasks. I try to keep myself clean and groomed even though lying in bed might be easier most days. I work on keeping my philosophy of GIVING rather than TAKING because it adds to my sense of pride, accomplishment, and worth rather than feeling helpless, victimized and dependent.
Pride and self worth are constructs that are not measured externally but internally. This may sound counter intuitive since we look at the size of man’s home, car, office, the awards and accolades that he and/or his family have won for academics, athletics, heroism, the social status and position they hold in the community, and we measure that person’s worth based on all of these. But the truth is a person’s core worth, value, and esteem are totally an internal concept. This is how a mother can love and stand by her son even when the evidence clearly proves he is a serial killing cannibal. My point is that if you are doing good deeds; caring about yourself and others; showing love, respect, and appreciation for who and what you are; helping those weaker and more needy than yourself; protecting the helpless and frail; feeding the hungry; listening to the lonely and ignored; trying to enjoy and appreciate the world and nature around you; and, offering a word of praise and support to someone who appears in need; then you are a greater success, more valuable individual, and wiser than any Ivy League educated, corporate president, Olympic medalist in the world. And if you have done (and still do) “Good Works” then you will live on in the hearts and memories of those you have touched, even after your flesh has wilted away. It is never too late to make a difference, but only you can make that decision. You can live with cancer and feel sorry for yourself, or you can succeed at life while dealing with cancer. This is personal decision and choice. I know which one I feel is the right one for me.
This is not to say that change is easy, convenient, cheap, enjoyable, desirable or preferable; but it is DOABLE! We have to look at our new situations and realize that our life as we have known it is now different, and we have to adapt to the new parameters and limitations of our new situation. Change is seldom enjoyable, but it can be beneficial and it is INEVITABLE! The law of entropy mandates that all things in the universe will change. To resist this or to deny this is futile. Change is an essential part of life. Learning to live and even embrace change simplifies and enriches our lives. Fighting it only adds stress and pain. The best definition of Mental Health I have ever heard is; “Mental Health is the Ability to Adapt to New Situations.” Those of us who cannot adapt to new situations and change (and Cancer is one heck of a big change) become irritable, depressed, frustrated, angry, confused, neurotic, anxious, even suicidal and/or psychotic. Those of us who (may not like it but) can accept and adapt to change (i.e. cancer) and new situations can not only survive, but prosper!
In conclusion, I encourage you to focus on the HERE AND NOW rather than the future or the past. It is very easy to reflect on what I had, what I have accomplished, the people I have helped, the lives I have helped change, the pleasures I have experienced, and I can just as easily sit and bemoan all of the lost opportunities and experiences that I will never have because my life will be ending. But every minute I spend focusing on the past or future is another minute I steal from the present. I try to live and love today, because I have just that: TODAY! If I focus on anything else, I am robbing myself of the chance to LIVE AND LOVE today and that is the biggest folly of all!