Has it Been a Year?

I’ve come full circle after one year with a breast cancer diagnosis…

It has! And what a year it’s been.

As a way to help myself while helping others, I have made a commitment to reach out to friends and friends of friends to share my experience. Who else might I be able to support?  How can I best use what I have been through to create good in the world, increasing positive resonance? This reflection on the ups and downs (maybe more downs than ups) is the first step in sharing my story. While my comments come from my dance with breast cancer and my treatment plan, I believe there are some universal truths to be found within that can translate to the journey with any illness— short or long term. 

I have been dancing and exploring myself through the lens of the Nia Technique for over ten years; initially dancing in classes just to get exercise in a format where I was not bored, I became curious. I kept hearing about the Nia white belt… eventually my curiosity led me to step in. Now I know that was one of my best decisions, as so much of what I learned about myself and how to navigate in the world has helped me survive this year of uncertainty.

The dance begins.

My cancer dance began with diagnosis. Once I spoke the truth of it aloud to others, it became real, and something I could work with. This reflects one of the 5 Levels of truth telling: the truth I tell others about myself: this is a tool I learned in Blue Belt, the second level of the Nia Technique.

Initial shock and disbelief was followed by questions like, “Why me?” and “What did I do wrong?” And then by anger, bargaining, and finally acceptance: “OK, Now what?”— all the stages of grief. Moving my body to music the Nia Technique way, exploring physical sensations and expressing the emotional turmoil without beating myself up as I learned during White Belt, helped me reach acceptance more easily. Seeking to control what I could, I questioned everything, asked for and received additional expert opinions, did my own research, finding the latest treatment information online. Dealing with this during COVID added an additional layer of concern.

What is this Cancer thing.

Taking time to establish a relationship (explored in Blue Belt) with my breast cancer was important. Every relationship has at least two interested parties, in this instance: me and my breast cancer; each of us with our own needs and of course there is the relationship itself. I though about what I needed from this relationship (peace, calm, distance, time) and what I brought (fear, medical knowledge, endurance, resilience). Then I imagined asking the cancer what it brought (chaos, disorder, diasporic invasion) and needed (to be known but ignored, sugar, fuel). I needed to create an agreement with the cancer: I will endure and be resilient, acknowledge and yet decrease the fuel.

I recognize that my breast cancer has arisen from my own cells and therefore really is a part of me expressing itself. In my view, it is like my body is a family, where some members assert themselves dysfunctionally, in their desire to be seen and heard. This translates to dancing with the dysfunctional part of me rather than fighting it.

Now what.

The size and location of my cancer dictated my treatment plan and the chemotherapy regimen I received; aggressive therapy was indicated, which meant the effects on my total organism, all 50 trillion cells, were also aggressive. 

My treatment plan began with chemotherapy, followed by surgery and then radiation. My scientific, logic-based mind led me to explore not only the side effects I experience and their physiologic basis, but also what might become long-term side effects and how to minimize those. For me knowledge is power and having an idea of what to expect helps me decrease fear of the unknown. I can then jump in the river, see where it takes me, find creativity rather than fear and distress. Nia Black Belt helps here.

Chemotherapy first.

I was given enough pretreatment medications before each infusion that I did not experience much nausea and essentially no vomiting, although my appetite was markedly decreased. It seemed that my stomach took longer to empty. The pretreatment regimen included steroids, which helped me feel quite well for the first two or three days of each cycle. I could cook, walk outside, interact with others. And then there was the cliff. Day 4 was rock bottom.

The first 4 rounds of chemotherapy entailed a combination of Cytoxan and Adriamycin, two very powerful medications. That was made clear by my body’s reaction! These two medications affect bone marrow dramatically by eliminating the cells that mature into white and red blood cells. This leads to a significant lack of immune defenses, and anemia. Another medication  given to counteract that, has the side effect of bone pain, and I mean pain!

With the first two cycles, I has so much pain, especially in my head, it took all my energy just to remember to breathe. When I did remember, I focused on following my breath into my belly, imagining that breath extending to each of my cells. I pictured the exchange of oxygen into and waste out of each cell, back into my circulation and then out of my body.  I remembered that the act of breathing involves movement of muscle, ligament and bone, so while I lay in bed feeling depleted and unable to move, I was in fact, moving, and movement is medicine, so just by breathing, I was self-healing.

I watched Nia videos on NiaTV.fit (among other things) or in live zoom classes, as that especially helped me feel connected. I imagined myself dancing with the class, and moved what body parts chose to move, for as long as they chose to move. During those live Zoom classes, I debated whether to have my camera on or off as I didn’t want to be a distraction for others; in the end I always kept it on, as I needed to see myself reflected there so I had visual confirmation I was alive.

Once the terrible headaches got better, I was left with extreme exhaustion. When I was able, I rose and swayed on my feet, in my natural time, finding I needed much slower transitions in order to stay grounded and balanced. At one point, I found myself holding onto the walls as I walked, and my resting heart rate was over 100 beats per minute. With movement, it got erratic, and I felt short of breath. Turns out I was anemic and needed a blood transfusion. After that, I felt much better and could walk to the mailbox, or the bathroom without holding on or needing a nap to recuperate.

Eight weeks of that combination of toxins was followed by twelve of Paclitaxel, another powerful medication; the side effects while different, were less dramatic, at least for me. It did leave me with delayed stomach emptying and colon trouble, skin rashes that were irritating. The side effects of Paclitaxel are cumulative over time, meaning that symptoms increase with repeat infusions. The most challenging issues for me are progressive muscle fatigue and numbness and tingling in my fingers and toes. That I can’t feel my feet on the floor leads to balance issues; my proprioception, my sensation of where I am in space, is off. 

What surgery will I have.

After completing all 16 infusions, my physical body had a slow but steady recovery. I was allowed about 4 weeks recovery time before surgery. There was enough residual cancer evident in my breast and lymph nodes that I again had no real option: modified radical mastectomy, which included the lymph nodes in my right armpit. My surgeon did her best to avoid damaging the lymphatic drainage of my arm, using blue dye to map those collector vessels so she could avoid them. I elected to remove the opposite breast as well, without reconstruction. In retrospect, the double mastectomy was a good decision; there were abnormal cells on the other side as well. I took time to say goodbye to my breasts, and thank them for all they had done for me. 

My youngest daughter accompanied me for the overnight stay; during COVID, I was allowed only one person and the procedure was done as an outpatient; since staff was at a minimum, the security of having someone present was important; I believe my daughter was empowered by being there for me.

While surgery is nothing new for me, having performed many procedures myself over the years, I was still fearful- in someone else’s hands. My Nia tools again worked in my favor; I thought about what I needed, and what my surgeon needed in this relationship. The clarity this tool gives allowed me to remain calm and relinquish control.

Over the course of the next 6 weeks, I recovered slowly. Sleeping only on my back, as I had drains and could not turn, I slept deeply. Not allowed to raise my arms above my shoulders and no repetitive motion, my family did everything for me. While I went very few places, I could not drive, so I was chauffeured always. Truly an exercise in slowing down, and letting go. I felt pampered and babied, yet after a while I became tired of being so dependent.Once again, I used Nia blue belt principle 5, power of three, to think about and gain comfort with my relationship with dependence and self-sufficiency.

Independence Returns.

Finally I was recovered enough to take off on my own for a week; choosing to go to the coast on my own, without my family, I walked on the beach, listened to the ocean and the birds. I ate well and did for myself. I slept when my body said sleep, and was active when my body said, “OK, get up and go out now!” I girded myself for the 30 sessions of Radiation therapy coming next.

My energy returned, slowly. I was left with achy legs and arms, as the effects of chemotherapy and inactivity on the mitochondria and tubules in my muscle cells persisted. The effects on the form and function of my peripheral nerves persisted as well; neuropathy continued. I was told these effects decrease over time for most recipients of neurotoxic chemotherapy agents. I choose to believe I will be one of those; Nia brown belt teaches that intention follows attention; I can manifest complete healing there. In the meantime, I am developing a deeper relationship with my body, mind, emotions, and spirit as I listen to the felt-sense of all I do.

Returning home with the prospect of radiation therapy looming over me was quite difficult. While I really wanted to be with my family, I did not want to start radiation therapy. This was the most fearful time of this whole experience for me. Radiation therapy is the part which I knew the least about. In my way, in order to calm myself, I did as much research as possible about how radiation works and the potential long-term effects on the body.

I was still afraid. 

Radiation therapy is energy.

Over the next six weeks the treatment themselves became routine; Monday through Friday I would wake up, have my morning coffee, repeat my morning mantra of creating the space for myself, my other patients, our caregivers, the technology, and finally NIA and all that is, and drive myself to the hospital.

Recognizing that radiation is the addition of energy to my body and recognizing that my body is mostly made up of water, 60 to 85% depending on how well hydrated I am, I realized that water transmits energy well, I sensed the radiation as energizing my body. I had the felt sense of vibration in my toes, even when the point of contact was my chest wall. I intentionally suggested that my healthy cells use that energy for good, taking that energy in to facilitate getting stronger, while the abnormal cells targeted by the radiation go bye-bye. I was tired and all my energy went to facilitating the cleanup crew; my immune system and my lymphatic system had the job of taking waste byproducts, the proteins and other molecules that were created by destroying the abnormal cells, and ridding my body of them.

Full Circle.

It has now been a year since my diagnosis. I am still me; I am alive, sensing the Joy of movement, the sensation of aliveness, vitality, the focus of the Nia Technique white belt. 

I realize that I’m through the active treatment phase of my cancer and am now in the maintenance phase. I will take medication for what seems like eternity in order to decrease the risk of recurrence. Letrozole prevents my body from making any estrogen; I’ll take this for 5- 10 years. The major side effect are the expected hot flashes of menopause, and painful joints. So far not bad for me.

I’ll also take Verzenio for two years. This one is a bit more dramatic in its side effects, so it calls for reevaluating relationship- now with this medication and the idea of risk of recurrence and quality of life.

As a way to help myself while helping others during my active treatments, I reached out to friends of friends and shared my experience with them. I created relationships with other women in the waiting rooms. I have confirmation that at my core, I am a healer. I am sustained by helping others connect with their healthiest selves.

What comes next.

What remains is building up my strength for my now and future me. Recognizing what is my best life. Determining how can I best use what I have been through and what remains of my life in order to increase positive resonance in the world. I continue to learn about myself through exploration through the Nia Technique, listening to music and moving my body through that lens. As this increases my awareness of myself.

I am now affiliated with Imerman Angels and Cancer Hope Network. With these affiliations, I hope to be able to support others one on one, and eventually to be able to share the Nia Technique with them in order to facilitate their healing.