On September 20, 2021, I received a call from Kaiser stating that a recent breast biopsy confirmed a malignancy in my right breast – invasive lobular carcinoma. The left had an atypical lobular hyperplasia – a form of pre-cancer that also needed to be removed. I was in my new office, having just posted a photo on IG filled with pride that my consulting firm had earned enough over the past year to pay for an office outside of my living room. I was also just beginning to integrate who I was after completing an 8-year journey to finish my PhD this past February. I was shocked, but not surprised.
Today the world ended. Tomorrow it begins again. Each sunrise is a beginning and an end. Today, yesterday, tomorrow. (Mom’s poem – date unknown)
Breast cancer dis-ease has impacted three generations of women from my maternal lineage. My grandmother, uncle, and mother all succumbed to this disease. Another aunt survived, and I am now the third first-cousin to also survive. Was this an inter-generational curse? A recessive gene? A common denial of an aspect of our voice and femininity?
Someday, you’ll know me. Perhaps long after our lives have drifted apart, either because of life or death. Someday, maybe you’ll understand, after satisfying your own search for you. Maybe you’ll find me. Maybe you’ll find love. Maybe you’ll find peace. (Mom’s poem circa 1966).
And if I am honest, since my Mother’s passing in 2002 until the moment of the diagnosis, I had been carrying this fear of breast cancer. It was like the actor of Death in the Brazilian film Black Orpheus – lurking in the shadows of joy, vigilantly preparing for an attack with annual mammograms, ultrasounds, and biopsies. It was as if I were born with this black pearl nestled in my breasts – a ticking timeclock- waiting to erupt.
I love to live; I live to love. I plan to live. I don’t plan to die. Death comes, we don’t have to plan for it to happen. Live goes on. (Mom’s poem – circa 1998)
Having internalized the rawness of this disease after witnessing its attack against my Mom as her primary caretaker, its presence guided most life decisions for the past 20 years. In some cases, it gave me courage – ‘I might as well do it now as I don’t know about the future’ and in other cases it was an inner voice that denied myself certain pleasures – including close, intimate relationships for fear that I may disappoint a beloved through the burden of a cancer care journey. I actually married by late-ex-husband out of a sense that he would be a caretaker in my last days, rather than waiting for someone I truly was attracted to and perhaps would have loved, as well as being there for each other as we aged. I worried about who would hold my hand on this future journey.
I dreamed about you last night. Well, it wasn’t really a dream. I heard you call me like you do when you come to the bedroom door, ‘Mom!’ I woke up and answered “what?” – then I realized I had to have dreamt that you called. (Letter from Mom – NCCJ Camp, June 1986)
So, when the diagnosis came, there was a sense of relief. Early advanced- HERS negative – estrogen and progestogen-positive- breast cancer – a non-aggressive slow-moving cancer (although it had metastasized to my lymph node raising the staging from 1 to stage 2). I finally had a chance to face this fear and pull every internal and community source of strength to transform it into a life-affirming awakening of sorts.
After consulting with a close friend who is one of the top breast cancer specialists in the country, I opted for a double mastectomy as an aggressive treatment for the current cancer. An exact month from the diagnosis, I had breast removal surgery on October 20th – a full moon and perfect time of release.
I hope that you didn’t think I was taking your stress lightly. I understand how you feel but I probably have more confidence in you than you have in yourself. You have landed on your feet- ready to go into every situation you faced and not only have made the best of it, but rose to the top. God has given you special talents and has us in making the right decisions. (Letter from Mom – Grad School, Circa 1994)
Circles of women – and some men – from various aspects of my life came together in prayer, warm thoughts, meals, social visits, sending flowers, and offering more personal supplies when constipated and could not shower for 3 weeks. I was held in such a gracious way that not only defrosted my fear but shifted the energy of my relationship to cancer. It wasn’t evil, nor a curse, nor something to fight. It was more of an awakening call from my maternal Ancestors asking me how was I integrating the lessons from the first half of life to have the strength, courage, and joy to fully BE as I approached the next and final half?
You won’t realize the significance of the words ‘Happy Birthday’ until you past through a few more years and recognize that the greetings are meant to wish you happiness in accepting each stage of life as it comes and encourage the continued seeking of good things that life brings. This came to me on one of the late thirty-something birthdays when I woke up and realized I was celebrating the last of the ‘young’ and moving toward ‘middle’. . . I realized that I had to make it happen on that day and every day. (Letter from Mom on my 25th birthday – June 15, 1997)
Nearly 2 months to the day of the diagnosis call, another full moon and partial eclipse – I received good news that I would not need chemo, only hormone therapy for the next five years. And, even more good news, based on the oncotype risk analysis, there was only a 13% chance of the cancer returning in the next 10 years. 13 – the number of facing death and rebirthing to spirit, the number of the Divine Feminine, a confirmation that this experience was indeed an initiation of sorts that marked the transition from the stage of Motherhood (although I am not a Mom) to what one of my godmothers calls ‘Baby Eldership’ – an early stage of being a Crone. Ase!
Do you think you are different from who you are? I see a mosaic and as life progresses all the colors and shapes have their place and depending on the focus, certain parts will shine. You have added new dimensions. Later. Love ya, Mom (Email, April 13, 1992)
Awareness, early detection, and advancement in medical technology and understanding of the various forms of breast cancer became tools to survive and cancel cancer as an auto death sentence. For far too many women though – we wait. Putting everyone else’s needs above our own – waiting for disease to advance before screening. For others we put off due to fear. Trust me, there were years in between that I did not want to be bothered – did not want another poke, smush, or scar. And for many of us, when we are diagnosed, we hold the information inside – not wanting to burden family and loved ones with our news. And finally, as professional women, we may not want to appear weak, vulnerable, or unreliable among work colleagues so we try to ‘push-through’ instead of taking the time to heal and nourish not just our bodies but our souls.
Having not had a serious illness, I never knew what an uplifting feeling it is to receive a card in the mail, a phone call or flowers as a reminder that someone is thinking of me. But more than that, your payers made me feel that I was in God’s hands. When I received the diagnosis, I felt that it was not the time for panic or pity, but prayer for the strength to withstand whatever may come. Going into surgery I thought about individuals and church groups that had prayed for me. I relaxed and went to sleep thinking, ‘His Eye is on the Sparrow, I know He watches over me.’ (Holiday Greeting letter from Mom, December 1997)
Working my way to the other side of this disease in a moment of global awakening as we continue to try to advance to a recovery stage from the Coronavirus pandemic, I believe that we must change the narrative guiding our lives.
There will be many more rivers to cross. Let the spirit of those who have made the crossing guide you and give you the courage to keep going. Mom-me (December 1998)
Here are two lessons that I therefore want to share as seeds of hope for anyone facing cancer, supporting someone with cancer, and even grieving the loss of someone close from this disease:
1) Cancer can be a muse – inspiring us to pause our auto-pilot norm; take time to come back to our bodies; re-member the stories stored in the body from when it has kept score of every life-event; decision; and emotion to date, and rewrite our own end of life story; and
2) Don’t go it alone – Most women I know who have been diagnosed with breast cancer are caretakers and in some cases have imprisoned their own femininity and dreams as a sacrifice to support those around them. Changing who we are and how we show up in the world can be difficult, but I am convinced that positive outcomes are possible when we don’t face this disease alone. Tell people. As an Elder told me – let people help. Don’t be ashamed – don’t feel it is a burden. In telling people – the universe will bring forth people to care for you and pour back into you all that you have given to the world – even those small acts of giving that you thought no one saw. God saw and will redress your wounds in golden light brought forth by angels to renourish your soul and motivate you through a vision of your inner-desires as a pathway to healing.
I don’t know what the future holds, and for the first time don’t really care. Right before my last biopsy, I was at a retreat in the mountains and standing with friends, we saw a shooting star. It was so close that I felt as if it shot through me, touching my heart and mind like a tap on the shoulder from the Divine. I remember thinking – it isn’t about ‘what’ I can or need to do in the future, not even about ‘seeing’ a future. It was only about the present. Taking time to see what was right before my eyes and what the collective soul wants me to see.
Happy Valentine’s Day to my Princess who is getting it together so her reign will be peaceful yet forceful. Love you, Mom! (Circa 1992)
Alisa's thoughts on Beloved Communities 