Burning Books and The End of Bad Expectations.

Depiction of book burning by artist Chris Wormell
Depiction of book burning by artist Chris Wormell
I have a confession. I have burned two books in my life. I am not a fan of censorship, I did read Fahrenheit 451, and to be fair I didn’t seek out every copy and destroy them, or start to steal them from public libraries to prevent others from reading them. Nonetheless I am a book burner. The first book I burned was a paperback “romance” novel I bought at a thrift store, it turned out to be a tale of romanticizing rape. Not only not romantic- very disturbing. It went into the woodstove.  It was so shocking for my young children that they still remember it, and the reason I burned it. May it make them better men. The second was a pregnancy book, I read while pregnant with my first son. It basically gave information for each week of gestation, including everything that could go wrong, like rare disorders.  Definitely not information that needed to be implanted into my brain while growing a new person in my belly. Pretty much the definition of borrowing trouble.

There is a known syndrome of medical students, in which they begin to experience the symptoms of the diseases they study.  This is an experience that studying up on Dr. Google can bring to all of us. These days a body doesn’t have to be incurring student loan debt to have phantom problems.  Being aware of this I am sometimes skeptical of my own perceptions. Looking at lists of side effects seems dangerous, does knowing about the possibility for something make it more likely to occur?

This self questioning seems pertinent when contemplating exiting off the superhighway of standard of care.  In the long woeful tale of my use of Tamoxifen I have wondered if my reluctance to take it initially had me suspicious and looking for trouble to borrow.  There are well worn studies showing that Tamoxifen is effective at preventing recurrence in ER+ breast cancer.  I didn’t want to throw the baby out with the bathwater.

A study¹ by the European Society for Medical Oncology shows that women with a higher expectation for bad side effects, actually do experience bad side effects at a higher rate while on Tamoxifen.  Which brings up more questions. Does this point again to the mighty powers of the mind?  If we can draw to us that which we fear, is not the opposite true as well? In point of fact all studies need to take into account the placebo effect, in which people get better even when given a sugar pill rather than the actual drug being studied. Consciousness is difficult to pin point, and therefor often ignored in the pursuit for scientific objectivity.

Here inside my body, inside my mind, I perceive myself experiencing a whole slew of unpleasant and even somewhat dangerous symptoms.  With chemo I was able to address my mindset- to shift my expectations towards believing there was a benefit to poisoning myself.  With Tamoxifen however I have not been successful in turning my mind to the never-never land of suspended disbelief I needed to embrace it.

It is estimated that somewhere between 25%-70% of women are either a) non-compliant, i.e. take it sporadically, or b) completely stop taking Tamoxifen prior to the end of their prescribed 5 years.  I have been compliant, with the exception of a month long holiday last May prior to adjusting my dose, and now since deciding to stop taking it on November 1st.

The balance scale has come out with more pebbles on the stop side than the keep taking side.
The balance scale has come out with fewer pebbles on the Keep Taking Tamoxifen, than the Stop side.
Like a balance scale slowly gaining pebbles on one side, I have been steadily giving weight to one side of my internal argument as to whether or not I ought to continue or cease.  In the last days of October the case for ceasing won.  I am reluctant to talk about the details of my decision to stop taking it, because I know that for some women if feels like a lifeline. I do not want to interrupt the magic trick their body may be performing with the assistance of Tamoxifen.  I truly believe that each person has their own right path forward.  Though in High School I felt myself to be “above” peer pressure, I have found myself swayed by the many thousands of nameless faceless women who have stopped taking Tamoxifen before me.  We are social beings, our neurons are in constant resonance with each other- my choice may influence another whether I wish it or not.

Choosing between all the treatment options can seem like picking a horse in a race...
Choosing between all the treatment options can seem like picking a horse in a race…
While visiting my sister we happened to watch a broadcast of a horse race at the Breeder’s Cup. The favorite ran the best race of his life, and came in second to another horse.  The odds were for the favorite- I am guessing that there are a more than a few who lost their shirts that day, while others won big on the dark horse.  It seems to me that trying to pick and choose a course of treatment is much like playing the odds at the track. As someone who was diagnosed with locally advanced inoperable breast cancer- that I am even here now in probable good health is already a miracle.  By choosing to follow my own path forward in this gift of a life, I am choosing to honor that miracle.  In essence I am betting that I am the Dark Horse.

At this point my oncologist is the doctor with the least contact with me. I am scheduled to see him at 6 month intervals until the end of 2018 – my proverbial 5 year mark. I see the lymphatic therapist monthly, every other month I go to Hai Shan clinic to have my TCM formula adjusted and receive acupuncture.  They are the ones who are looking me over most closely at this point, and it is their care that seems to be most in alignment with my own magic.

Time for a bit of caution.
Radiation treatments were something I chose to avoid.
For someone who has not pursued anything outside of the standard of care box, my choices may seem insane.  I believe that Western Medicine has some amazing tools, I have benefited from some of them. However, now has come the time in which I am going to set one of those tools down.  When I chose to not do radiation therapy after my mastectomy and pCR I heard a few things from people in the oncology world. The most irresponsible were the first radiologist, who basically told me I was chasing death, and the chemo nurse, who  gave me stories of patients haunted by regret when their cancer returned after they refused some suggested treatment. If I had not personally been witness to over five people I loved dying despite doing everything western medicine had to offer I might have been swayed. Luckily my oncologist, and the second radiologist I consulted with were able to discuss it with me with more restraint. We looked together at the studies that applied to my situation, and they admitted that my case was outside of the clear benefit box for radiation.  They were able to admit that their might be a difference between what they are legally required to offer me, and what might benefit my particular situation.  My attempts to discuss Tamoxifen with my oncologist have not been particularly fruitful. He simply states that he doesn’t have any statistical data for what happens on either a lower dose, or of stoping early. He prefers me to stay on it as prescribed.

The fact that I have no breast tissue left at the scene of the cancering activity reduces my chance of local recurrence greatly. The fact that my initial diagnosis was locally advanced, indicates that cancering cells were in circulation in at least my lymphatic system, and likely my blood. Therefor my chances for metastatic disease are likely higher than my chances for a local recurrence.  If that day comes, radiation would not have prevented it.

Will I have regrets if my cancering returns?  I am certain that I will feel a whole host of difficult emotions. My efforts will hopefully be focused on being present, and making the best possible choices, rather than on chastising myself for following my gut intuition.

Taking tamoxifen for over two years does purportedly give me some benefit.  My gut is telling me that it is enough for me, and that other things are more important for me to focus on right now.  I don’t like the fear I have of what others may think about it.  I fear their possible doubts. When I told my friend Kestrel that I had chosen to stop taking it she immediately said “Yay!” which was helpful. This definitely feels like a situation in which I relish the presence of yes men, rather than nay sayers.  I liked that when I made my decision re: radiation, Dr. Andersen, my oncologist, stated that once my decision was made he wanted us to move on, and felt that it wasn’t something he would hold against me.

At this point I am moving forward with my current decision to stop Tamoxifen. It feels a bit like that moment in which I flung the book into the woodstove- resolute with a touch of passionate disgust.

+++++++++++++++++++++++++++++++++++++++++++++

¹Article about the Expectations study: https://www.sciencedaily.com/releases/2016/08/160822215239.htm

 

 

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3 Comments Add yours

  1. roobieerants says:

    Trusting your gut instinct is absolutely the only way to go.

    I made some decisions which took me slightly off the standard care pathway and may live to regret it yet however, like you, my emotional sense of well-being which is directly linked to my capacity and freedom to have some ownership of my body and what happens to it, is too important a part of the quality of my life to ignore.

    In the end I will live with the consequences of decisions I have made far more comfortably than if I felt I’d had no say.

    Your life, in your hands Iris and I can’t imagine there is a better person to take care of such a precious soul.

    Much love, much respect.x

    1. Iridacea says:

      Thanks for the thoughtful words- this crazy cancer trip is so filled with difficult choices. Here’s to all of us having the most benevolent outcomes!
      Love- iris

  2. Mary Walters says:

    B comfortable with ur decision n know that what is right for you is what’s important. N don’t forget that ATTITUDE is everything!

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