Every three weeks I entered the infusion room with a sharpie marker. I used it to write little messages or blessings on my IV bags. Things like ” Thank you yew tree” on the bag of Taxotere, or “Avoid the heart” on the Herceptin. The little ritual of checking to make sure it was my name and my birthdate printed on the bag, became a moment of intention, of prayer, which I then wrote out onto the label. It has been a way to consciously align myself to my treatments. A means of finding gratitude in unexpected places. A way of overcoming my hebee jeebee response to having various substances pumped directly into a major vein.
This week was the last time I will enter that room. I wrote out my last message with my sharpie. They gave me a sparkly tiara to wear. I said my goodbyes to the nurses, and to a fellow traveler who was diagnosed around the same time as me, and is also finishing up herceptin this month. Afterwards the surgeon performed the short procedure to remove my IV port. All the trappings of a coming out ball. Which makes me a debutant. I was giddy with nervousness.
Having my last Herceptin treatment made me think about what it might mean to be Her2+. Yesterday I spent the day in bed, just a bit woozy, with a very active mind. Asking questions like, “When my body switched on the cancering cells, why did the cells over express HER2 receptors?” A type of cell receptor which in a healthy body is most numerous on heart cells. It occurs to me that one way to look at it is that to be diagnosed HER2+ is another way of saying that I “suffered” from an over-expression of the heart.
So what now? It seems that the emotional, spiritual and mental work of my healing may be wrapped up in this one mystery; Why Over-Express the heart? Specifically what created that over expression in my right breast? Why create a second heart center in my body? What was my body trying to communicate to me, or compensate for? Was my heart shut down in some way? Or was my concern and worry for the world and my community and my family like a hemorrhage of heart energy? Perhaps my breast tumors were like the little Dutch boy’s finger in the dyke – a block for an energy leak, an attempt to hold back a sea of emotion. Was it my body crying out for more love? Or was it love unexpressed dying to be heard? Was it too much empathy or not enough? Was it perhaps grief? Whatever it was, am I still doing it?
All these questions are the form my worry about reoccurrence is taking. As I leave behind the miracle of targeted therapy there is no longer any safety net between the high wire of health, and the cold hard ground.
Knowing what an over expression of the heart might mean -for me in particular – seems crucial right now. Like key information that can protect me from making the same mistake twice. Like knowing can somehow protect me from reoccurrence. By asking “WHY did I over express the heart?” might I be led towards healthier expressions of love?
HER2+ breast disease is more likely amongst premenopausal women. How does this connect to the workings of the heart? Is the heart work of the “Age of Mothering” different from the heart work of the the “Age of Croning?” Does HER2+ status have anything to do with mothering, or the need to be mothered? Was I over nurturing or under nurtured by my chosen life? Perhaps HER2+ cells are just the cancering style for the “Bleeding Heart Liberal.”
When Joe and I married one of our vows was to keep our heart open, despite any anger, sadness or pain. Perhaps my over expression of the heart was connected to my deep love of people and the natural world. Love is always on the same coin as loss. The dark side of loving trees is the heartbreak of clear cuts, the joy of friendship is sometimes upended with the sorrow of loss. To keep loving the tiny miracles of this life, in a time of chaos and destruction is to court grief. There is pain in fiercely holding to ideals of how the world could be. You run the risk of being maudlin, running yourself ragged, or simply being regarded as a freak.
Ostensibly I have been cured, a truly humbling thing. At the same time all of my doctors have treatment plans that continue for the next five years. In the words of my surgeon, my body has “Proven it knows how to make tumors.” The post surgery goal for my western medical doctors was to hunt down and neutralize microscopic ghosts of cancering pasts with Herceptin. Next up is to set up a human scale SETI program to scan for cancer activity within me, so that more aggressive treatments can resume if needed. I will have blood tests and imaging on a regular basis. I will take tamoxifen for several years.
In the case of naturopathic and Traditional Chinese Medicine (TCM) the goals are to continue detoxifying and healing from the western medical treatments, and to foster balance of mind, body and spirit. I will continue in the regiment of office visits every six weeks. They will adjust my formula of Chinese herbs and nutritional supplements. Of course there are protocals recommended for exercise, sleep, water, and mindset thrown in.
The session with my TCM practitioner on Monday ended with a reminder to maintain my self care- even when I engage in more altruistic activities. He chastised me gently for neglecting my needs in the face of my recent kinwork. Our society teaches that taking care of others has its highest expression as self sacrifice. My Doctor’s words reminded me that if I care for others at my own expense, it is unsustainable – and that in the end everybody loses.
Historically to be diagnosed HER2+ is to be fatally flawed, a truly tragic expression of unmet needs. The game has changed with targeted therapies, to be HER2+ is now a survival advantage. Which makes me wonder if perhaps the world is more ready now for the nurturing energy of the feminine to come forward, perhaps from now on to over-express the heart will be seen as a blessing?
On our trip to NM back in September I read a great book “HER2 the story of the making of Herceptin” I am glad that I read it late in the game. The facts about the aggressive nature of HER2+ breast disease were sobering. It was much more comfortable contemplating them on the far side of a PCR. It was hard reading the stories of women who died waiting for access to an experimental therapy, the very same one which likely saved my life. I feel awestruck by all of the many coincidences and unlikely events that culminated in the development of Herceptin. It seems that even in the world of science and fact and microbiology that there are miracles.
The immense love sent towards me during my treatments led me to the idea that I could let all that love flow through me, and become a love amplifier of sorts -sending love and light back out into the world. It seemed to me that my precarious state of health gave people around me permission to express their feelings – which they might normally keep inside. At times it felt almost holy. The love energy did not feel personal, but rather more universal in nature. That universal love seems to me an important contributor to my healing.
As I step more and more out of that altered state of intensive treatments, I am no longer sure how love might work in “normal” interactions. Especially if the ways I was interacting with love and self care and service prior to my diagnosis led me down a road to breast cancering, I am loath to return to “normalcy.” If I was cured by love, how can I be more reserved? If love is healing, why would I ever choose to withhold my love?
Theoretically my seemingly cancer free body is no longer over expressing heart neurotransmitters. I may never know what the underlying need is that spurred my cancering action, or what exactly led to the proliferation of manic breast cells covered in HER2+ receptors. I know that there are a crowd of contributing factors. Perhaps love is now my safety net. Believing that could be either my downfall or my deliverance.
Regardless, I need to master the high wire act which is my life now. I need to find work for my sharpie marker in my post herceptin reality. To maintain a practice of blessing what I put into my body, of being grateful. I want to keep my vow of an open heart, to learn to express, without over expressing, my heart.
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Hello, Sweet One!
Listen to this great story about the heart:
“The first study to reveal the biological primacy of interpersonal connection was the Roseto Study…. Forty years ago, researchers were drawn to Roseto Pennsylvania, by a bewildering statistic that defied medical logic. Rosetans were nearly immune to a stress-related disease that is the number-one cause of death in America– heart disease. Over a seven year period, no Roseto men under forty had died of a heart attack. For older men, the rate was barely half that of men in neighboring towns.
Even more mystifying was that residents lived hard lives, the kind that would have typically lead to an early grave. The poeple of the village were poor. The men smoked and drank wine liberally. They spent their days doing backbreaking and dangerous jobs in the belly of the quarries. They ate a Mediterranean diet, but it was not the heart-healthy kind. Their diet was laden with fat….The researchers tested and tested the data but none of the data could explain it.
Perhaps, the researchers thought, the explanation of this phenomenon was social in nature. Perhaps it was the character of the people, which was unusually vivacious. …. Most striking to the researchers was their genuinely positive regard for one another: ‘They are mutually trusting and mutually supportive.”
They discovered two interesting facts. Both the crime rate and applications for public assistance in the community were nonexistent. When they took a closer look, they found that Rosetans took pride in taking care of their families. Nearly all homes contained three generations, and elders were revered. Mealtimes were much more than a matter of eating. In warm weather, villagers took evening strolls and stopped in to visit with neighbors. Community events were also common Roseto. There were many social clubs and church events, in which the whole community took part.
After further study, the researchers concluded the reason for the villagers’ good health was the deep sense of connection with family and community.
Major studies at Harvard, Carnegie Mellon, and UCLA have corroborated the Roseto Effect. It is now well established that mutual respect, cooperation, and a sense of belonging contribute significantly to people’s health and longevity.”
Isn’t that amazing?!