Making Decisions

Introduction

I was sitting, half dressed on an examining table, feeling a bit wobbly and staring balefully at my oncologist. He was trying to talk me out of a decision I had just announced. "Look, Brian," he said, "you don't need a bone marrow transplant. We can manage your disease with chemotherapy." He was emphatic. "But this feels right for me," I said. "Don't you see?" He would not accede the point. "This transplant idea would be like taking a sledge hammer to crack a walnut," he said. "It's too much. Too risky. Let's keep our powder dry for the time being, OK?" As it turned out, it was not exactly "OK" with me. My mind was made up. I eventually went to the Dana Farber Cancer Institute in Boston to have what was then called a "front-end" autologous bone marrow transplant.

The goal of a bone marrow transplant (BMT) is to replace a patient's abnormal bone marrow cells with healthy ones. This is accomplished by destroying a patient's bone marrow with full-body radiation or ultra high-dose chemotherapy and then injecting healthy bone marrow cells from either a donor (allogeneic transplant) or cells from the patient himself (autologous transplant). In my case, I donated my own bone marrow, which was then chemically "purged" to get rid of cancer cells and later given back to me as part of the transplant procedure. A "front-end" procedure means that the transplantation is done at the outset of the therapy regimen rather than at a later point when one's disease has relapsed. Typically, a BMT is done only after all other treatment methods have failed.

I had my BMT in 1990, when doing an autologous transplant as an initial treatment for low-grade lymphoma was still considered experimental. The idea was that if the transplant was performed early on, there was, theoretically, a better chance of a cure, or at least a substantial remission. I am not sure why I was so determined to follow this more risky, unorthodox course. I had a very close and trusting relationship with my oncologist, and up to that point he had made most of the treatment decisions for my lymphoma. I just felt that a transplant had to be done, sooner or later, and I knew in my heart that it had to be then.

A Personal History

I had been diagnosed stage IV low-grade, B cell non-Hodgkin's lymphoma, and had much to worry about, as do many patients with this disease. From the very beginning I had realized that there were several conflicting medical opinions about how to treat this disease. Some physicians preferred a watchful waiting plan, where little is done until symptoms arise. Others believe that small amounts of maintenance chemotherapy should be used to keep the malignant cells in check. In 1990, there was a group of oncologists who firmly believed that early, aggressive intervention, using autologous bone marrow transplantation, could be potentially curative. This was the group I wanted to follow, even against the best advice of my treating physicians. I was following my instincts and doing what I felt was right for me. Faced with a dreadful situation, I had to take a stand against the disease.

For weeks before my decision, I suffered with this choice, talked with friends and family, my own doctors, read everything I could find about similar cases, even sought second and third medical opinions. All my treatment options seemed like trade-offs. Too little treatment, too long a treatment, not enough potential benefits, on and on. My mind was whirling with information, options, ideas, and hopes. My family tried to be helpful but often only added more conflicting opinions. I was becoming overloaded with information, and as a result, was defaulting on making any decisions at all. I was becoming increasingly anxious, and the more anxious I became, the less I was able to think about my decisions rationally. I needed to fix my thinking.

I should add here that perhaps I was not a typical patient. I am a clinical psychologist and I was at the time on the same faculty as my doctors, so they were also my colleagues. It was sometimes hard to know if this actually helped or hindered my treatments. I don't recall ever being given any special attention, but because of who I was, I do think my doctors listened to what I had to say.

But I was struggling as all patients do, with the need to feel safe and informed enough to make active decisions about my own treatment. As a new cancer patient, I searched constantly for a feeling of safety. Most of the time I lived with a dread that tomorrow was going to be my last day on earth. It was so common for me to be anxious that I actually forgot what it was like to be confident, or at least not so riddled with fears that I couldn't think straight. But I came to realize that feeling safe and being safe are not the same thing at all. Faced with these huge, life or death choices, such as which treatment course to take, I had simply dropped out of the game. Gone AWOL, left the field to the experts, my doctors. I remember thinking, "It's their disease, they know the language, they have the experience, why should I get in their way?" In short, I had abandoned myself.

As a psychologist, I have often seen people become so obsessed with one idea or a belief that they literally can think of nothing else, and they find themselves going in circles, driven by an anxious preoccupation with their single idea. Balanced thought is often a winding road that requires discipline and confidence to follow. I had become obsessional about making the "right" decision about my treatment, which had created so much anxiety in me that I forfeited the decisions altogether.

Decision Phobia

Speaking with others has showed me that I was not alone in this tendency. Many new cancer patients, at one time or another, get caught up in what I have come to call decision phobia, the fear of making a "wrong" decision. Like any phobic behavior, fear of making decisions comes from an exaggerated apprehension about the perceived potential consequences. People who are phobic about germs worry that any germ they touch will harm them. Not true. People with social phobia fear that being in contact with others will lead to humiliation, shame, and intense embarrassment. Not true. However, this fact does not alter the unreasonable level of anxiety that phobic people experience. If they believe their fears are justified, nothing else matters.

Treatment For Decision Phobia

How can these unrealistic perceptions be altered?

Systematic desensitization
Psychologists have found that what works best in treating fearful behavior is a technique called systematic desensitization. It works like this. If a person has unrealistic fears and does everything possible to avoid facing the cause of this anxiety, than the person never has an opportunity to overcome these fears. They avoid the possibility of facing their fears, and in so doing cut off the chance to learn. Being a successful "avoider" means that the fear is maintained, and in fact the anxiety often worsens over time. If a person faces his or her fears a little at a time, while being supported and encouraged by others, there is a chance that their heightened sensitivity or phobic fear, will diminish. Hence the term systematic desensitization.

If you are phobic or obsessional about making decisions, the first thing to do is to make a list of decisions that raise your anxiety. Put them in an order ranging from least troubling to most troubling, and number each from 1 to the highest number. This is the desensitization process. Here is an example:

My worry list about having a bone marrow transplantation:

• I will die during the procedure all alone, with nobody there to help me.
• I will have the BMT and then be constantly sick and debilitated the rest of my life.
• The process of getting ready to have a BMT will be too hard to tolerate and I will give up or fail or both.
• I will never work again after this treatment program.
• My insurance will not cover the cost of a BMT.
• There are no other alternatives to this treatment.

Notice how the list proceeds from least to most worrying at your own personal list will create anxiety. Actually, vividly imagining doing the decision-making might cause panic. The point is, the list is real, it reflects your primary concerns, and it triggers intense, disabling anxiety.

Re-training your associative mind
Your job is to visually imagine each item in the list as vividly as you can, until your anxiety peaks. The moment this happens, picture yourself as healthy, happy and enjoying life at a time and place of your own choosing. Most people have an imaginary getaway location, say a deserted beach or high mountain top, which they use as the escape trigger. Each time the anxiety-loaded image peaks, you counteract it with an opposing, peaceful image that contradicts the negative power of anxiety. By systematically proceeding through the list of items and pairing each one with the opposing escape trigger, the negative image gradually loses its negative meaning. This happens because our ability to be anxious is based on what psychologists call paired associative learning, that is, combining a painful negative experience with a certain event, place, thing or person. For example, when a child reaches out to touch the hot stove and his mother yells "NO", the startle reaction becomes associated or paired with that event. The likelihood of the youngster touching the stove again is reduced significantly. The child has become "sensitized" to the hot stove as a thing to avoid. For many cancer patients, this is how chemotherapy becomes "associated" with nausea. Just the idea of going for chemotherapy can make you feel sick. When we "desensitize" the associative learning, we are uncoupling our fear and replacing it with an alternative, less emotional response.

Most of us have thousands of negative experiences in our lifetimes. We learn from them, and eventually they become part of our belief systems and affect the way we view the world and our part in it. These experiences are part of the reason that some people struggle with making decisions, especially the important ones. Decision making, for many, is felt to be risky and sometimes painful. For some, making decisions can feel life-threatening.

A Thought Sweep
Another way to "desensitize" to your decision-making anxieties is to carry out what I call a thought sweep. Make a list of the decisions that worry you a lot, and beside each item write down exactly why it makes you anxious. Do this for every decision that worries you. Then challenge yourself about the reasons for your worry. Ask yourself:

• What would really happen if you made a "wrong" decision?
• What is a "wrong" decision compared to a "right" one?
• What if the "wrong" decision gets made?
• Are all decisions complete and irreversible?
• Who says you only get one chance to do it "right"?

Applying these to MY bone marrow transplant worry list, here is an example of how the exercise might work. Take the first item, about alternatives to BMT treatment. My challenges to it are:

• Is it an absolute "must-do" that I decide right now?
• What can be done with alternatives such as monoclonal antibodies, vaccinations, and newer therapies?
• Is there a guarantee that the BMT will work?
• Can I decide to do nothing and just wait?

With this type of structured evaluation of my decisions, the process became less stressful and more productive. It takes a little time, but it is well spent.

Looking at Decisions Rationally, Instead of Emotionally
This exercise helped me move forward on my treatment decision because when I reviewed my options rationally and not emotionally, I had to move forward with the bone marrow transplant.

The next fear that had been preoccupying me was the belief that I would not work again after a bone marrow transplant. I was pretty firmly set in that belief, but when I looked for evidence to challenge my opinions I found that there were literally hundreds of BMT survivors who were alive and well, and working. Case closed on that issue.

Likewise the other items. I looked at each decision that created anxiety in me, became "desensitized" to them, and was better able to look at them calmly and make the decisions that needed to be made.

The point is clear to me, if you do not take charge of feelings based on suppositions, then they will surely take charge of you. There is no straight and obvious course of action in choosing cancer treatment. Life's decisions are more like a tree's branches than a telegraph pole, and you need to branch out in order to flourish.