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Coping With the Initial Diagnosis: The Soul In Crisis
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Coping With Devastating News: The Soul In Crisis
Dr. David Rosen, a psychiatrist and Jungian analyst, has written that healing is a natural process towards wholeness that involves our soul and our need to find meaning in our suffering. In a sense, it is a process of soulful death and rebirth. And what can facilitate such soul-filled healing is the "trust, empathy and compassion" shown by family, friends, physicians and therapists. And, in our experience, it is frequently by acknowledging the pain, shock, loss and fear that a newly diagnosed cancer patient experiences, that helps facilitate such healing. Part of this acknowledgement is recognizing that there are very clear, definite and normal phases of loss which most of us who have cancer go through following our diagnosis.
Based upon my own cancer experience, and those of my clients, I find that the following three phases of loss are the ones that cancer patients will most likely experience when newly diagnosed. They include:
Phase One - Crisis/Shock—This phase reflects your initial emotional reaction to a possible terminal illness diagnosis. This includes panic, denial, and shock. This is normal.
Phase Two - Isolation/Awareness of Loss—This phase is characterized by not being able to talk about your anxiety over being diagnosed with cancer due to feeling thoroughly overwhelmed. There is a need at this phase for you and your family to be able to talk to one another about your fears. Signposts signifying this phase include: crying, anger, guilt, shame, and fear. Again, these are ALL normal reactions to an abnormal situation.
And, Phase Three - Anger/Conservation and the Need to Withdraw—Anger is a natural response that we experience with being diagnosed with a chronic or possibly terminal illness. This period is also a time of emotional exhaustion requiring you to conserve energy. Look at it this way: You have been hit up-side-the-head with a huge emotional wallop! You may die. You may suffer. You may become disabled. This causes grief. And grieving is fatiguing. One of the most common ways that we with cancer cope is by withdrawing to conserve energy. Rather than it being a stigmatized clinical depression, you have exhausted yourself during the previous two phases of loss and now require rest in order to "re-charge" for the battle ahead (see Chapter 2, "The Reluctant Samurai: Preparing for Battle.")
It is my experience that you will go through one or more of these phases of loss starting from the time you are diagnosed up to the time you receive your first treatment. Unfortunately, once the initial crisis of diagnosis is over, you and your family will then be thrown into a whirlwind of activity, leaving you insufficient time to ponder the significance of having been diagnosed with a potentially fatal illness. Feeling like you've entered the Twilight Zone, you and your family will now find yourselves moving into what we call the "Crisis Action Mode." And like an amusement park roller-coaster ride, this phase is filled with many ups and downs.
The Seductive Emotional Abyss: Entering the Crisis Action Mode
In addition to the three phases of grief that we have outlined above, the real emotional "hit" that we as cancer patients face often takes place AFTER the treatment ends. Why is that?
Well, you—the person with cancer—are not unlike a soldier readying for battle. You have been thrown into the ordeal of having to select a doctor who you feel comfortable with, not to mention having to find a hospital, having to decide on treatment, and getting people to "cover" for you at work. It is during this time that you, along with your family, will experience a host of secondary losses that go along with being diagnosed with cancer. Examples of such losses include: loss of a body part or bodily function, loss of normal energy, loss of personal relationships, loss of appetite, undesirable changes in appearance, loss of insurance or financial security, and missed opportunities at work and at school. These are all serious and profound assaults on your soul and your inherent personhood. All of these losses sooner or later need to be acknowledged and grieved. Grief expert Dr. Terese Rando warns that "secondary losses," such as these are often overlooked and not identified as being legitimate losses. Because of this, you may experience a strong delayed grief reaction once you've completed your treatment.
Crisis Intervention for the Soul: Getting Through "The Humpty-Dumpty Effect" and Coping With Your Diagnosis
Patient Checklist
Feel your feelings!! Do not stuff your feelings with alcohol, drugs or incessant work. Give your soul a chance to release and re-energize. Create a protective emotional cocoon!! Surround yourself with supportive people who won't make light of your grief. Relieve the pressure!! Talk about it. Cry. Be patient with your process!! Allow time for the shock to wear off after learning your diagnosis. Extra nurturing for extra stress!! Get adequate rest and eat well. Remember what we said above, grieving is fatiguing. Your mind and body are under incredible stress—not unlike a soldier readying for combat or an Olympic athlete recovering from a grueling competition. During grief, it is not unusual for your body's adrenal glands to release fight/flight stress hormones that can cause your brain's mood chemicals (serotonin, nor-epinephrine and acetylcholine) to drop, thereby causing you to feel down and depressed. When this happens your body will increase the production of its natural painkillers called endorphins. The elevated endorphin release may stimulate your appetite. This coincides with what my cancer and grief therapy group members tell me; that during their grief, they began to over-eat or eat sugary foods in order to feel better.
Put things in perspective and take your grief seriously!! Take off from work whatever time you need. Reach out to others who are in the same boat!! A collection of fellow traveling souls can do wonders. I talk more about this later on in the support group chapter. But briefly, I recommend that you join a support group for your particular kind of cancer BEFORE you decide on which treatment to take. That way you can gain crucial information from those who have already gone through the procedures to make an informed decision. Get at least a second and third opinion from t wo other doctors before committing to treatment. Go to the bookstore, library or Internet, and obtain as many books and articles on your particular kind of cancer; especially those WRITTEN BY PEOPLE WHO WENT THROUGH IT THEMSELVES! Contact the American Cancer Society, the National Cancer Institute and the University of Pennsylvania Cancer Center. Among the Internet sites that I have found most helpful during my own cancer journey, were the following:
University of Pennsylvania Cancer Center
http://cancer.med.upenn.edu
University of Pennsylvania - Global Resources for Cancer Information
http://oncolink.upenn.edu/resources/
National Cancer Institute (NCI)
http://www.cancer.gov
Clinical Trials
http://www.centerwatch.com
http://www.clinicaltrials.gov
http://cancertrials.nci.nih.gov
American Cancer Society (ACS)
http://www.cancer.org
National Family Caregivers Association (NFCA)
http://www.nfcacares.org
Medscape Today
http://www.medscape.com/
When you meet with your doctor, or when you go for a second opinion, ask the following questions: Can you provide me with referrals to people who teach guided imagery, hypnosis, biofeedback or cognitive behavioral therapy? (This will help you cope with the stress of your diagnosis and to prepare for the upcoming treatment protocol). What are my treatment options? Would a clinical trial (testing newly developed drugs) be appropriate for me? What are the short and long term risks, and possible side effects of each treatment that you have recommended? If I have pain, how will you help me manage it? How will my day-to-day activities be affected by the treatment? How long will my activities be affected for? What is the follow up care for each treatment?
I also recommend that you organize your family and friends into three different teams so you don't burn them out. This is extremely important! Team 1 goes with you to the doctor for the diagnosis and stays with you through your first treatment or up to the point of being hospitalized. Team 2 goes into action with you while you are hospitalized and until your cancer treatment is complete. And finally, the third team of support people follows you from the point when treatment ends until you emerge from the after-treatment emotional abyss (which can last anywhere from 6 months to a year after the completion of treatment). By doing this, you will be supporting and empowering your own inner soul as well as those of your family an d friends. I describe the emotional abyss in more detail in Chapter 6. Begin Practicing: Start calming and relaxing yourself by practicing biofeedback, hypnosis or meditation, through the help of a licensed practitioner. And finally, expect to experience a "delayed grief reaction" once your treatment ends. This is due to suffering a variety of losses in response to your cancer, on both a physical and emotional level. In Chapter 9, "Putting ‘Humpty' Back Together," I explain how to work through this left-over grief.
Physician Checklist
For physicians, I recommend that when you deliver the initial diagnosis, do it in-person. Clear your schedule for at least a half an hour and don't be in a rush. Sit down next to your patient, not behind a desk. Maintain eye contact and give the diagnosis in a caring but direct manner. Have prepared relevant WRITTEN information for your patient to take home with them. This information should include the correct spelling and definition of their type of cancer, a list of current treatments, their potential success rates and side effects, and the names of three other oncologists/urologists in the community who you respect, that the patient can go to for second opinions.
In addition, give your patient a list of psychologists in the community who specialize in doing therapy with cancer patients as well as a list of support groups and a list of practitioners that offer such complementary treatments as: hypnosis, biofeedback, guided imagery, and "Chi Gong" breathing. The complementary therapies that are most requested by cancer patients are: acupuncture, aromatherapy, Bach flower remedies, herbs, massage, meditation, and Yoga.
Also helpful, is a list of contact phone numbers to the local American Cancer Society Chapter and to its "Buddy" program, where a person who has already been diagnosed and treated with your patient's type of cancer can visit your patient in the hospital or at home.
I also recommend that you provide your patient with a list of addresses and phone numbers for companies who manufacture tasteful wigs for those scheduled to undergo chemotherapy and/or radiation, as well as phone numbers for sperm-banks and a list of caregiver support groups.
To close, I'd like to quote Rabbi Naomi Levy when she says:
"Healing is not something that is going to descend upon us from heaven. It is something that we are going to have to FIGHT for...The fight begins when we can muster up the courage to start over, to pick up the pieces and rebuild that in which tragedy has shattered."
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