Stage IV breast cancer was certainly not part of my grand plan. In having this advanced cancer, the learning is on! I am in a true fight for my life. I have a lot to give and so much that I want to do. I want my life and I know that I have the ability to heal. I have to learn how to re-establish health and balance in my body. At this point, despite the prognosis, there are so many possibilities.
The past months have been indescribable. In fact, I have struggled to write and stumbled in finding words. There have been crazy highs and crushing lows. Following my dream wedding, my diagnosis felt like the earth gave way beneath my feet. It was such a shock. For the first time, in such a long time, I had felt confident and clear about my future, ready to work hard, start a family and build the life that I had always dreamed of.
Everything happened so quickly! I struggled to finish a final semester of graduate school while being dragged through a crash course in cancer. Not only did I have a mastectomy, removing my right breast, and lymph node dissection, I also had a purple port placed into my chest. I call this my Barbie port, wondering why it has to be purple, when it lies unseen beneath my skin. This allows the delivery of chemotherapy drugs to go directly into my heart. All this, before I learned that the cancer had metastasized.
After two months of chemotherapy treatment, I was overwhelmed and overjoyed to learn that I was in remission. There are no visible signs of cancer in my body! The tumor that was in my liver is gone and there is no sign of metabolic activity. This is the best possible news and it gives me strength to know that the treatment is working. My doctor nailed the right drug combination for my body. I feel so blessed to live in a time and place where so much progress is being made in beating this disease. The new drugs are getting better and better, thanks to so much concern and support. These drugs are, however intense and do their own damage. Now, I must turn my attention to completing treatment, rebuilding my body and keeping the cancer from taking hold again. I will stick to the original treatment plan: more chemotherapy, radiation and possibly more surgery. Despite thinking that I live a health conscious life, I must now go further, learning to live, eat, breathe, bathe, think and move in a different way.
In facing cancer many things have become clear. I love this life! I am keenly aware that if I want my life, I am going to have to fight for it. I am going to have to figure out what it is that facilitates greater balance and choice in my body. I am going to have to create a less toxic environment in the products and activities I choose. It is so easy to take good health for granted. When disease descends, everything changes.
My daughter Xola Rose was born on May 27th, 2003. Soon after her birth, we learned that she was not expected to live long, a week or a month. On June 27th,we celebrated her one-month birthday. And in July, we celebrated her two month birthday and on and on for a year! Then we kept celebrating, having beaten the odds. We celebrated in the morning and with the full moon, with chocolate or with a cold breeze, with eggies from the chickens or tamago on rice, with sparkles or finger paint, at the ocean or at the aquarium and more and more until slowly moment-by-moment we were celebrating. Xola loved water, snow, fabrics and texture. My wardrobe is still made up of velvets and sequins. In fact, these days two years after her death and with this new cancer adventure my wardrobe gets more radical, flamboyant, more “Xolie” by the day.
Xola taught me much about how to live and what is important. She had seizures and often struggled to breathe. I was aware of the possibility of her death everyday and eventually living with this awareness transformed into an everyday sort of celebration. For Xola, ice cream for breakfast was totally reasonable. In listening to her breath, I learned to appreciate and to notice the present moment. I think of her continually as I take on these new challenges. She was very brave. She knew the hospital routine too well. Children who face chronic or terminal illness often have an incredible wisdom and a way in the world that rewrites the script. Xola was one of these kids and mothering such a child I always felt would be good training for something big.
When I was first diagnosed, I felt confident that my experience with my daughter would make navigating illness and the health care system easier. This has not proved to be the case. I am better equipped to face my own mortality, to live with joy and to carve my own way. However, tackling the health care system and managing all of the disparate components of treatment is proving no easier now than it was in fighting for my daughter’s life. I see once again that there are many tools at my disposal but it is up to me to learn how and when to use them. I see once again that it is my job to restore health and balance within my own body. I see that no pill, no particular treatment can do that for me. I have been trying to think of my chemotherapy as a gift, appreciating the collaboration of so much experience and experimentation within this incredibly extensive network of participation in healing. I have to remind myself of this often, as chemotherapy is by far the hardest thing that I have ever done. The literature about stage IV breast cancer is depressing. I know the statistics and I have stopped reading them. Xola taught me not to believe prognoses. There is more to life and healing than is well understood. I feel that I have been hired by the universe to explore these things further.
I feel inspired, honored and amazed to witness this incredible outpouring of love and generosity. I hope that sharing my story will in some way help others. I am curious about the biology of relationship in healing. My graduate thesis is proving fertile ground for the seeds of this curiosity. I believe that all this love and prayer has played a significant role in supporting my remission. I feel humbled by the need to ask for help and overjoyed to witness the brilliance and power of our extensive community. It has been an amazing direct expression of love and healing to have healthy meals made for Bryan and I. My sincere gratitude goes out to each of you who have held me in prayer, light and health in the past months. I hope that you will take this remission as a personal victory in helping me to get better. I send the biggest THANK YOU from the depths of my heart and soul. And the work continues.
I believe that there are solutions to the crisis in our healthcare system and if we must find them through baby steps then at least it is a start. It has been frightening to come to the awareness that in our country the right to LIFE, liberty and the pursuit of happiness is limited by health insurance mandates and one’s ability to find a way to pay for medical treatment. In six months I have amassed a pile of medical bills totaling almost $220,000. I am struggling to fight my insurance company, which has denied payment and I am still waiting and praying on Medicaid. Somehow, it will work out. Either way, there are considerable restraints on my future choices based on maintaining medical coverage. I have managed with lots of help, to get out from under much of the debt I had from my daughter’s care and this alone is a tremendous weight lifted.
These are amazing times. Unbelievable adventures continue to unfold. We never know what the next moment holds. I have faith that in the coming years we will surprise ourselves with what is possible. The devastating and widespread impact of this disease on our communities demands a solution. I feel so lucky in this life and I want to contribute as I have been so blessed. Having this cancer is in many ways a gift. It is hard and I cry sometimes but then I see things sort of sparkle. It directs me to conserve my energy towards peace and joy. It reminds me of the words of my favorite chemistry professor, Dr. Pollack from Quinnipiac University. He used to always tell his lab students to “leave it better than you found it.” I want to be here to work hard to leave this place better than I found it. Having this advanced-stage cancer brings forth the celebration of life as precious.
As it stands, I feel like I am about ninety-eight years old with a head cold. I have made it through five 28-day cycles of chemotherapy and with each day I feel that I have more to give, not in physical strength but I am learning. I dream of Bryan and I having a child, building a house in these beautiful foothills and of working to contribute to the understanding of health and healing. I pray that one day I will be an ancient elder with much wisdom to bestow, skin like raison in the sun, with a long flowing white afro surrounded by children.