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Helpful Tools in Coping With Cancer

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The Healing Narrative Questions & SANITY Matrix Grid

The Lost Soul and the Medical Narrative: Where Did Humpty Go?

When I use the term "disease," I am referring to the physical part of your cancer - the tumors, fluids, tubes and medications. Being disease-oriented results from having been immersed in the medical model of reality for so long that your personhood is missing. Where did it go? Where did "you" go? How are you going to come to terms with your old normal –who you were before cancer— while trying to create a new normal or new self, after having cancer?

When I use the term "illness," I mean your soulful and emotional experience of having been diagnosed and treated for cancer. How has your disease impacted you - mentally, socially, financially, emotionally, and spiritually? What do you think about how your disease has impacted you? Do you feel proud, worried, depressed, anxious, guilty, or ashamed? How did your diagnosis impact family and friends? Did it bring you together or did it drive you apart? What do you think about that? How is cancer affecting your relationship with your body right now? What is the meaning that you attach to your cancer? These are some of the ingredients that make up an illness experience that is contained in a healing narrative. This healing narrative can breathe new life into your sorely challenged soul.

The Problem Is The Problem—You Are Not The Problem! Using Narrative Therapy

Jungian analysts believe that the stories we tell ourselves are necessary for our survival. Story making and storytelling are the soulful ways in which we make sense out of the world. We literally think with stories. And when we're not listening to stories, we are telling them to others or reciting them in our heads. We literally shape the world we live in with the stories we tell. Such stories are called life narratives.

There's an approach to psychotherapy called narrative therapy. Narrative therapy holds that your life is literally and emotionally defined by the narratives or stories you share with others. And the narratives you tell can either nourish or neglect your innermost self. A good narrative literally has the power to change your past-- by revising the conclusions that you have made about what has happened to you—as well as your present and future. We all tend to construct our narratives with "observed passions, documented facts, births and deaths, brick and mortar…and light and shadow." The bottom line is that it is important to look at the narratives you tell yourself. Why? Because the old ones still shape your personal life and the new ones that you construct can transform your life as well as empower your soul and educate your heart.

For example, I have discovered several recurring narratives that my depressed or anxious clients in therapy continue to tell themselves on a regular basis. They include:

"If I'm not perfect, I'm unlovable."
"I'm defective and bad."
"People are not be trusted."
"I am hopeless."
"No one will help me."
"The worst will always happen."
"I have to be mean or aggressive to get my way."

By forming these narratives at an early age, without having the adult advantage of being able to critically analyze the veracity of such beliefs, my patients end up feeling depressed or anxious. And if you subscribe to a personal narrative that says you are "defective" or "unlovable" or "bad," then you will form a story around your cancer that blames yourself for getting ill. The cancer diagnosis is seen as some sort of punishment for how you have behaved.

By being thrown into the medical merry-go-round during the crisis action mode following diagnosis, you end up losing your soulful narrative of who you are. This is due to being pulled into a medical narrative and substituting your doctor's way of making meaning of the world for your own. You gradually become that "Stage II-B carcinoma of the breast, in room 918." When this happens, you have lost the essence of who you really are and become the disease.

In order for you to soulfully emerge from the post-treatment abyss, and successfully discover and construct a new post-cancer self, you will need to consciously examine the story or narrative that you have been telling yourself about getting cancer. Then you must re-write a new story or new narrative to promote survival and healing on both an emotional and physical level. This is what the Healing Narrative is all about.

Giving Meaning To Your Illness Experience: Re-entering the World With A New Narrative

One way of using the healing narrative is to begin to let go of the story that says you are the problem or that you are your cancer and, instead separate out your disease from who you are and who you want to be. As Ric's sister had chastised him, "don't call it ‘my' cancer. You are not the cancer!"

The first step in putting your inner Humpty Dumpty back together is to reconnect with the person you were before cancer and then look at the person you are now, after having cancer. Then, think about what kind of person you want to be in the future. The goal here is for you to separate out or "externalize" the problem of cancer from being synonymous with who you are as a person. Instead, you want to be able to see your cancer as being a problem outside of yourself that you happen to have a relationship with. Make the problem the problem instead of you being the problem by following these steps:

Step 1: Start your healing narrative by taking out a piece of paper, or opening a favorite journal, booting up your computer, or breaking out your paint brush or tape recorder--whatever works for you in order to record all that you have been through in your journey with cancer and the meaning that you have attached to it. What follows is the step-by-step process of constructing your own healing narrative—a narrative that breathes new life and hope into your inner soul.

Steps 2 and 3: Record all the factual experiences that you and your family have gone through since being diagnosed with cancer. Then, in reviewing this medical narrative, answer ALL of the following questions in order to create your own new personal narrative (along the lines suggested by the great work of anthropologist/psychiatrist, Dr. Arthur Kleinman, sociologist, Dr. Arthur W. Frank and narrative therapists Dr. Michael White, Dr. Jill Freedman and Dr. Gene Combs) of your cancer experience. The questions are:

What was your first reaction (thoughts and feelings) to being told you had cancer?
What do you think caused your disease?
How did you decide which doctor and hospital to go to and what treatment to undergo?
What was your family's reaction to your diagnosis and treatment?
Who was most supportive of you during this time?
How did you prepare yourself mentally for surgery, chemo, and/or radiation?
What physical or emotional side effects did you have as a result of your treatment?
What has the disease done to your body?
What course do you expect the cancer to take in the future?
How has this disease affected your life?
What is your reaction to how this disease has affected your life?
What do you fear most about this disease?
What do you expect of the treatment?
How has the disease affected your life?
What do you think about how the treatment has affected your life?
How has the disease affected your family and friends?
What is your reaction to how this disease has affected your family and friends?
How has your disease or treatment been a problem for you?
How does the problem show itself?
What does it feel like to have this problem in your life at this time?
How would you describe the way you relate to the problem?
What kind of things happen that caused the problem to take over?
What has the problem gotten you to do that has been against your better judgment?
How are you the same and how are you different since having cancer?
Does the disease blind you from noticing the resources that you have to cope with it?
Has there been a time when you have been able to get the best of the disease or the problems it has caused? How did you do this and what do think about having been able to do this?
Has there ever been a time when the disease or its problems tried to get the upper hand, but you were able to resist its influence? If so, what enabled you to keep the problems at bay? What were the steps you took in doing this?
How can you use those very same steps or maneuvers now?
Have you ever been able to escape the problem for even a few minutes? What enabled you to do this? How can you do this again, now?

In giving testimony to all that you have gone through from the day of diagnosis to the present, you will begin to vent stored-up feelings and tension that will release energy for you to emerge from the post-treatment abyss and construct a new normal self after having cancer. Also, you will shake loose your medical identity and escape from the medical narrative of yourself being a Stage-II carcinoma to becoming someone who takes an active stance in forming a new identity, by re-telling your story, by forming a new narrative—one that heals.

Crisis Intervention For Your Soul: How To Use The SANITYMatrix™ For The Really Tough Challenges In Your Journey With Cancer

There will be times during your journey with cancer that are going to be extremely painful, terribly frightening, and emotionally traumatic. Examples include being told for the first time that you have cancer, experiencing severe nausea or weakness to the point of not being able to stand up or walk across the room or, during follow-ups with your physician; being told that your cancer has returned or that the treatment is no longer working. These are literally crises for your soul. So, when the going gets really, really tough, what can you and your loved ones do to regain a soulful center to get the better of the situation at hand?

Well, out of my own experience with being diagnosed and treated for prostate cancer, and with the reality that it can come back at any time during my six-month check-ups, I have developed a new tool called the SANITYMatrix™ for you to use when your soul is in crisis. The SANITYMatrix™ stands for "S-soulful, A-action, N-narrative, I-intuition, T-thoughts and Y-yearning emotions" Matrix. It is a tool for taking an inventory of your soul and re-charging it for maximum healing of mind and body through your feelings, thoughts, intuitions and actions. The SANITYMatrix™ literally and soulfully allows you to rewrite the story you tell yourself and others about the crisis or dangers you face. In this way you are better able to cope with the demands of that crisis thereby giving you the best chance to either thrive while you have cancer, or soulfully survive a long-term remission, or completely overcoming your cancer through a cure.

The first step in using the SANITYMatrix™ is to complete the "Transformational Grid," given below in Figure 1, using the 14 Pods of Healing. The healing pods of the SANITYMatrix™ grid are made up of two parts. Part one is for working the problem or crisis that you are challenged with, as it is at the moment, in its initial form (using Pod Columns A-G). Then once you have completed the first seven pods, go ahead and complete part two of the grid. This is the re-working of the crisis or problem that you are faced with in a way that you "choose it to be." I give you back the control over the lack of control, thereby diffusing the possible soul-damaging effects of the crisis at hand (using Pod Columns H-N).

To illustrate how to do this, I have completed a sample SANITYMatrix™ Grid on himself. The two most horrific and terrifying crises that I faced after being diagnosed with cancer was the shock of hearing the news and undergoing surgery. For all of my life up to that point, I had never had an operation, never had stitches, and was healthy and "in control" of my body. Being told that I had cancer and needed surgery changed all that in a manner of a few minutes. As I said in the Introduction and in the beginning of Chapter 1, "… I found myself crying, shaking, yelling and frantically calling all of my loved ones after hearing the diagnosis. I was literally forming a new narrative, a new story of my life circumstance involving my own death or complications from surgery. This produced an incredible amount of fear and caused my inner soul to be wary, hypersensitive, and fragmented. In thinking about surgery, I had tremendous anxiety and suffered from insomnia while my inner soul felt traumatized, hemmed in and under siege. How the heck was I going to cope with all this? Was there any way to feel better?" There was, and that's where the SANITYMatrix™ came in. It worked for me and it can work for you too.

Step 1: Start with pod (column) A, and write down the event or situation that is causing your current crisis or trauma. You need to describe it as factually as possible, as if a video camera were recording it. In my case, the situation in Example 1 was being diagnosed with cancer. The situation in Example 2 was preparing for surgery.

Step 2: Then, go to column B and list the emotions or feelings that you are experiencing in reaction to the situation or event that is taking place. After listing your feelings, rate them on a 1-15 scale of severity, with 15 being the worst or most intense form of that feeling. In my case, in Example 1, I was feeling fear at a level of 14, anger at a level of 8 and depression at a level of 12. In Example 2, I was feeling fear at the highest level—15+!

Step 3: Then go to column C and list your reactions or behavior in response to the event and feelings listed in columns A and B. For me, in Example 1, I observed myself crying, yelling, pacing, shaking and calling loved ones. In Example 2, I suffered from insomnia, began to have panic attacks and found myself putting off doctor appointments or giving blood.

Step 4: Then go to column D and list two or three thoughts that are going through your mind as you think about the situation that you are facing. For me in Example 1, I had the thoughts of "I'm going to die." "Is it curable?" "How do I break the news to my family?" And in Example 2, I had the thoughts of "What happens if there are complications?" "Will I feel pain?" "How much blood will there be?" It is these thoughts that actually lead to the feelings you listed in column B, not the event itself, and whatever you think can be reformulated into a new way of thinking.

Step 5: Then go to column E and list what your intuition tells you. What is your felt sense about all of this? What is it that your gut is telling you? These impressions are more subtle than your thoughts and less stinging than your yearning emotions. For me, in Example 1, my intuitive sense was that I was in unchartered territory, and was probably facing the battle of my life, as well as being vulnerable due to having to trust other people with my physical safety and destiny.

Step 6: Then go to column F and describe the story that you find yourself telling yourself and others about the crisis or trauma that you are facing. What is the first narrative that you came up with in order to make sense of what is happening to you in the midst of the present crisis? For me, in Example 1, I noticed that I was telling myself the story that "I am now a cancer patient. I am sick. I have stage II-B prostate cancer. I'm at the mercy of my doctors." In Example 2, the narrative going through my head regarding surgery was along the lines of "I am the 39-year-old prostate cancer patient undergoing a radical prostatectomy and hoping for the best. Surgery is supposed to be the gold standard. I'm doing what I'm told."

Step 7: Now go to column G and list in bullet-point fashion one-word descriptors of the effect that the current trauma or crisis is having on your total being and soul. For me, in Example 1, the one-word descriptors of how this whole situation was affecting my soul consisted of: "wary, subdued, hyper-alert, supersensitive, pushed, pulled, and scattered." The one-word descriptors that I came up for Example 2, preparing for surgery, consisted of: "traumatized, hyper-alert, under siege, confined, and controlled."

At this point, you have completed Part I of the SANITYMatrix™ Grid and have done a thorough cleansing inventory of your soul and how the current crisis or trauma has affected you. Congratulations! This is hard work and you have soulfully risen to meet the challenge. Now it's time to take back control of the lack of control that your disease has brought and turn your crisis or trauma around so it becomes an opportunity that you can soulfully take advantage of and mold, under your own thumbprint.

Step 8: As I did with my own crisis as demonstrated in Figure 3, start with column H, and re-write a new personal narrative—a story that will enable you to get a handle on your crisis and one that allows you to take a different, more soul empowering stance than in column F of Part I. In my, with Example 1,I created a new, more power-based narrative that said, "I am Larry, a special and vibrant person with unlimited thoughts, feelings, and actions, who just suffered a physical and emotional assault. I will decide what relationship or stance to have with my cancer. I am not that ‘Stage-II-B' specimen in the first narrative."

Step 9: Next, go to column I and list any new feelings that come up for you in reaction to your new narrative in column H. After listing your new yearning emotions, rate them on the same 1-15 scale, with 15 being the strongest form of that feeling. For me, it was "confident-10, charged-15, excited-10, proud-6, and hopeful-8."

Step 10: Next, go to column J and list the new proactive behaviors that you either find yourself doing or plan to do in response to your new narrative in column H and your new set of feelings in column I. For me, in Example 1, it was observing myself using a strong voice, laughing more, journaling his daily experiences, and being more focused on my goals in getting well. In Example 2, I slept restfully, breathed normally, got things done on time and talked in an assertive and confident manner.

Step 11: Next, go to column K and list your new set of thoughts resulting from reviewing what you had put down in columns H-J in Part II. For me, in Example 1, I began to think different thoughts—soul enhancing thoughts—such as, "I'm not going to become my cancer." " I will pull out all the stops to make it through this." " I am going to do both traditional and complementary healing treatments." "I'm going to pull my team together and go for it MY way!" In Example 2, I found himself beginning to think that "I have reviewed the safeguards for surgery." "If there are any problems, I believe there are sufficient resources that exist to help me during surgery if I need them." "The surgery team has an ample supply of my own blood, which will make it safer if I experience excessive bleeding and need a transfusion." "And after talking to the anesthesiologist (more on this in the following chapter on soulfully coping with surgery), I am now partly in control of my pain management following surgery."

Step 12: Next, go to column L and list all of your intuitive impressions that now arise from your new narrative, you new set of feelings, your new proactive behavior and your new resulting thoughts recorded in the previous four pods. For me, in Example 1, I listed "Taking back control, battle has begun, confident, directed, energized, and go for it!" In Example 2, I listed "Protected, clearer, more trust than not, intuitively seems like the right way to go."

Step 13: Next, go to column M and list, in bullet point, one-word descriptors, the effects that having your new narrative, feelings, behaviors, thoughts, and intuitive impressions bring about on your soul and total being. In my case, in Example 1, I listed "Blossoming, integrated, balanced, vibrating, in tune, and humming." In Example 2, I listed, "Centered, normal, control, freedom and pumped."

And finally, the last step, Step 14: Go to column N and list three new strategies suggested by the results of Part II of your SANITYMatrix™, to put into place next time you face a similarly horrific or intense crisis related to your journey with cancer. For me, in Example 1, I came up with: 1. If I jump to worse- case scenarios, I will force myself to entertain at least two other possible outcomes that could occur just as easily. 2. I will find out all the information that I need to make an informed decision ahead of time and then steer the ship or run the show from then on. 3. I will divide up my support system of family and friends into three teams so I don't burn any one team out. In Example 2, I came up with: 1. Go to a support group FIRST, and speak to other people who have undergone surgery and get their tips and recommendations. 2. Read all I can find regarding my type of surgical procedure and the possible alternative options. 3. Use positive imagery and relaxation breathing exercises to prepare for my surgery.

At this point, following your detailed in depth use of the SANITYMatrix™ and filling in the 14 Pods of Healing on the Transformational Grid, your sense of aloneness, your sense of horror, and your overall sense of helplessness and vulnerability should be greatly reduced if not totally eliminated. By giving yourself this gift of using the tool of the SANITYMatrix™, you have rescued your soul in crisis and, like the ancient samurai warrior, have put into place your heartfelt skill of Fudo.

At the end of the following three chapters, which pertain to how best to cope with surgery, chemotherapy, and radiation, you will find a blank SANITYMatrix™ grid included for you to use. This will help you prepare to enter the next phase in your journey with cancer: receiving medical treatment designed to eliminate or keep your disease in check. It is to these chapters that we now turn.

PART I:

A)
Event#

B)
Yearning Emotions
(1-15)

C)
Reactive Behavior

D)
Thought(s)

E)
Intuitive Felt Sense

F)
Narrative Conclusion

G)
Effect on Soul/Total Being

PART II:

H)
Rewrite Narrative Conclusion

I)
New Yearning Emotion
(1-15)

J)
Proactive Behavior

K)
New Resulting Thoughts

L)
Effects on Intuitive Felt Sense

M)
New Effect on Soul/Total Being

N)
3 Strategies for Next Time!

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