You say Placebo, and I say Nocebo.

pla·ce·bo (pləˈsēbō) a. A substance containing no medication and prescribed or given to reinforce a patient’s expectation to get well. b. An inactive substance or preparation used as a control in an experiment or test to determine the effectiveness of a medicinal drug.

no·ce·bo (nəˈsēbō) A detrimental effect on health produced by psychological or psychosomatic factors such as negative expectations of treatment or prognosis.

I’m reading a book called “You are the Placebo” by Joe Dispenza. It outlines how your brain and body work together to heal. What I am learning is that the placebo effect could more accurately be referred to as the placebo effects, as there are a variety of brain pathways involved, and each can create a placebo effect. The book refers to three: conditioning, expectation and meaning.  As I wrestle with making my decision about next steps in my treatment I am aware of all three.

On Friday we traveled into PDX for appointments. I had an echocardiogram to check my heart – the valves look like little clapping hands when seen on the screen. We met with two of my doctors, who clarified several things for us. We discussed outcome statistics, and they confirmed the fact that I am in a bit of a statistical no man’s land. Because new treatments have outpaced outcome studies, recommendations for treatment are sometimes based on older information. They deferred radiation questions to our second opinion appointment on Monday with a radiologist.

Heart valves via wikipedia
Heart valves via wikipedia

On Friday we were presented with a new drug that has been shown in clinical trials to reduce bone metastasis in post-menopausal women. As I am currently a crone as consequence of the chemo treatments, the drug Zometa was offered to me. It is given via infusion every 6 months for three years. It also works to improve bone density – lessening the chance of osteoporosis. They gave the run down of possible side effects so that I could make an informed decision. The only known serious side effects occur very rarely (somewhere around 1%). Unlike myself, I voted to go ahead right away and get the first infusion after my herceptin. I say ‘unlike me’, as I usually ask for more time to consider each treatment. I think perhaps the radiation question was so overbearing that the Zometa choice seemed small in comparison.  Once I was in the treatment room, the infusion nurse brought me over Tylenol and encouraged me to drink lots of water over the next few days. The most common side effects she said include flulike achy bones, possible low fever, and upset belly. I began to realize that the drug was perhaps less benign then I suspected.

Saturday and Sunday I had bone pain and a mild fever. Not suffering but a general bluckiness. Bone pain is different from joint pain I have come to realize. Taking Advil kept it manageable, but I did spend much of Saturday in bed watching documentaries on ancient Egypt to distract myself.  On Sunday morning while reading the placebo book on the power of the mind, I couldn’t help wondering if I would have even had bone pain if they hadn’t told me about the possibility. After all there are people that experience no side effects at all. Is the listing of side effects a nocebo? And I wonder, is it possible to make an informed decision without being effected by the power of suggestion – a catch 22.

Creation: Crow flying with Coyote Chromosomes on cattail paper
Creation: Crow flying with
Coyote Chromosomes
on cattail paper

I know firsthand that my mind can create health or sickness. During my pregnancy with Sam I worked at the Job Corps Center. I worked with a lot of young people who smoked, and in general were beset with colds. I had picked up the idea that pregnancy granted me a period of super immunity. I truly believed that I was less likely to pick up a bug because I was pregnant. And it held true – I cruised through that pregnancy in a glowing state of health. After Sam was born I was talking to someone – it may have been at a mama’s group gathering, when I mentioned how great the protective effect of pregnancy was. “What are you talking about!” They said. “Pregnancy depresses your immune system, so that you don’t reject the baby.” Whoa. They went on to give me the real facts. Fast forward three years. I am pregnant with Martin. I am a stay at home mom, no germy teens. I got probably five colds during that pregnancy. I no longer was protected by my belief.

Following my pCR I was filled with positive expectations of my outcome. I had assigned a specific meaning to the pCR. I was operating in the realm of miracles. The talk with the original radiologist knocked me out of that positive mindset. Ignorance was bliss. And I felt really angry about having to reevaluate my decision.  Once the cat is out of the bag, there is no neat and tidy way to put it back in.  Once my confidence in my original decision had been shaken, I was in a new paradigm.  If my stage zero status has no impact on the reoccurrence risk, than what exactly does it mean?  I responded by doing research, reading academic papers on pCR and indications for post mastectomy radiation. I am starting to wonder if doing more research, to be yet more informed is potentially not that helpful.  My situation is squarely in the grey zone, more research is just making the clear waters more muddy.

Radiation works by breaking done the DNA of your cell's chromosomes, cancering cells are more vulnerable to such damage.
Radiation works by breaking done the DNA of your cell’s chromosomes. Cancering cells are more vulnerable to such damage.

On Monday our visit with the 2nd opinion Radiologist went well.  It seemed clear that he was coached, or at least briefed by my oncologist. He had read my entire file including my imaging files and pathology reports. He was careful with his language. He acknowledged that my situation is in the grey zone, and that the statistics they do have refer to a benefit in regards to local reoccurrence, with only a very modest improvement in overall survival benefit.  He confirmed that if I do have a local reoccurrence that it is likely that I would not be able to use radiation again.  Which is a drag, as a local reoccurrence would then definitely necessitate more chemo, which might not be the case if I still have the radiation tool available in my tool box.  He made his recommendation while emphasizing that it is my choice.

He was the first doctor to not need to tell us a story of someone who died after they tried alternative treatment, and their cancer progressed.  It is interesting to me that all of the western doctors have needed to tell such cautionary tales to us, as I have not been avoiding western medicine at all, simply complementing it.  Such comments are in the realm of the Nocebo Effects, the dark twins of the Placebos.  Sometimes it is referred to as medical hexing, for instance when a doctor says someone has only three months to live, and then they die at three months. Even if they were originally misdiagnosed.  Words and thoughts have power. Not just the words and thoughts of the person with an illness, but also those of the healer.  It is not just medicine we receive from our doctors – it is the blessing they bestow by keeping a positive image of our health in their mind that leads us towards health.

Early Patent medicine bottles.
Early Patent medicine bottles. Such medicines relied upon the charisma of medicine show “doctors” for their power.

These past ten days of contemplating have led me to a deeper conviction about the importance of pursuing healing, rather than just curing.  The reality is that my body knows how to dance the cancer dance, and how to dance the healthy dance.  Hopefully this process has shown my immune system some new tricks, and it will now be better at shutting down cancer dance parties before they set up tumor nightclubs in the future.  But the rules of the game changed when I was diagnosed. In so many ways I no longer have the luxury of living an unexamined life, nor to be careless of my wellbeing or the care of my body. It is my job to thrive.  If I choose to veer off the western medicine path, by not using radiation at this time, I add the work of protecting myself from the nocebo influence of the cynics and pessimists whose fears imagine me in the grave. I know that I am not choosing fear or ignorance as my guide, but reason and gut feelings.  I now believe that my oncologist Dr. Andersen will continue with a positive mind about my situation no matter how I choose.  As I  move forward, I must leverage the placebo effect in my favor whichever path I walk.

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5 Comments Add yours

  1. sue skinner says:

    Wow. Just Wow. Outstanding piece. Thanks, Iris!

    Love,

    SueS

  2. Eileen says:

    The path of reason and gut feeling is the right path. Continue to go down it. Love ya!

  3. Jeanne Comeford says:

    This piece- so much of your writing- is so powerful. You are a writer with heart and clarity. I’ve sent positive energy/prayers to you when I walk my dog Lily. I love the reminder that words and thoughts have power.
    We met many moons ago when you came to visit Kathleen and then again when I visited Astoria with Zig and Jack.

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