“See you on the other side,” I say to each of the 18 friends I have lost to metastatic cancer in the last four and a half years.
So many deaths, but before that, so much love, laughter, tears, and hugs.
My story begins where most stories end. I have been diagnosed with widespread metastatic cancer. Discovered during an ophthalmology appointment, the doctor turned my world upside down when he said, “You have an eye tumor. No one just gets an eye tumor. You must have metastatic cancer.”
Brain MRI and CAT scans swiftly scheduled and completed, my oncologist gives me the results over the phone: Eye, breast, bone, over a dozen tumors in my brain, and multiples in my lung, the largest measuring four centimeters. No words of encouragement. What can you say that would be encouraging after this news? Dr. Google says that with brain metastases, I will be lucky to live 11 months. An eye tumor, evidence of advanced brain metastasis, makes 11 months sound optimistic.
The diagnosis assaults me like having a gun held to my head. No one can help me. My mom, visiting from Hawaii, has always been my savior. She is wise, prescient, strong, but there is nothing she nor my husband can do to save me.
I am terrified.
A few days later, waiting for my appointment with Hope, my oncologist, I overhear two young women say to each other, “See you at the next BAYS meeting.” I wonder to myself, “What is BAYS”? I Google “BAYS breast cancer” and find Bay Area Young Survivors, a group I had never heard of in my 14 years of dealing with early-stage breast cancer starting at age 36.
I send an e-mail to the group and get a call from a woman named Erin. She tells me about Mets in the City (MITC), the subgroup of BAYS dedicated to metastatic women. She listens to my story — it feels so good to have the opportunity to speak with someone who gets where I am, who understands the terror — but she is, I think, aghast at the extent of my metastasis. Most of the new members have bone, not organ, metastasis. Bone cancer is generally a more painful type of metastasis, but carries an overall longer life expectancy.
I go to my first MITC meeting, arriving over an hour late. I have never participated in a support group before, and don’t know anyone who has metastatic cancer. A good thing, of course, but I feel like I am facing this completely alone. There are only three women there. Not knowing what to expect, I become nervous, but the women welcome me warmly. At the end of the session, the eldest, with long silver hair and kind eyes, comes up to me and says, “There’s something special about you.” I look into her eyes and reply, “There’s something special about you too.”
This special woman is Merijane, a 20-year survivor of metastatic breast cancer. A mentor to me in so many ways, Merijane is a poet, a writer, a cancer support group facilitator, and a much-loved friend to so many in different walks of life. She and I indeed become close friends as I try to help her with the fallout — jaw necrosis, loss of mobility, and the isolation that accompanies the life of a shut-in — of decades of cancer treatments.
Also at that first meeting is Julia, a kindred spirit and a mom of two, about the same age as my own two children, bridging high school and college. Beloved by every high-end restaurateur in San Francisco, Julia and her husband run an organic farm. Julia and I bond deeply in a remarkably short time. Bearing tiny snacks of expensive cheese from posh Bi-Rite Market, her favorite, I sit with her through her chemo sessions. We enjoy soul-baring girls’ sleepovers at my house. During our last sleepover together, we cling to each other and cry. We know the end is near for her. She is terrified.
I still think of Julia every day. She is my soul sister. When she died, I thought I wouldn’t be able to continue the journey without her, but I have. Almost three years have passed.
Merijane died a year after Julia.
On the drive back from a retreat at Commonweal for Mets in the City, four of us discuss the unusual diagnosis of our friend Alison, who also attended the retreat. Alison has breast cancer surrounding her aorta. Janet, an MD, says, “You know, I like to try to guess how each of us will die based on the location of our mets. I think Alison will probably just drop dead while walking down the street.” To a one, we simultaneously shout, “Wow! How lucky!” We then burst out laughing at the synchronicity of our reactions, a united response that would likely shock outsiders. Unfortunately for her, Alison did not drop dead walking down the street. She endured the drawn out and painful path to death we all expect and dread.
Janet, pediatrician, snowboarder, and mountain climber, died six months after Alison.
I have lost so many mentors and friends over the years. And, because BAYS has an age cutoff of 45 years old or younger at first diagnosis, I have become the second oldest member, taking on the role of mentor to the newly diagnosed. Meeting Ann through Healthline made me realize how much I missed having a mentor. While an online dating algorithm would probably not have suggested a promising match, we bonded through our shared experiences as mothers and metastatic breast cancer sisters. As a breast cancer blogger, she has mentored many women she has never met in person. Ann is a great inspiration to me and I look forward to our continued friendship.
How grateful I feel to know and love these amazing women, women I would not have met had I not developed metastatic cancer.
Assessing my journey at this point, well past Dr. Google’s expiration date, I can honestly say that cancer has had a net positive effect on my life, at least so far. While, certainly, the treatments and tests have sometimes proved difficult — I was compelled to go on long-term disability from a job I loved due to the load of medical appointments, fatigue, and loss of short-term memory — I have learned to appreciate every day and every one of my relationships, even the very fleeting ones.
I discovered fulfillment volunteering at several nonprofits, including raising capital for a new preschool building, taking unwanted food to the hungry, and taking in new members to our metastatic group as well as facilitating and hosting support meetings. I study two languages, dance or do yoga every day, and play the piano. I have gained the time that has allowed me to meaningfully support friends and family going through serious life challenges. My friends and family have surrounded me with love and our connections have deepened.
I have walked through the looking glass, to a life living with metastatic cancer so antithetical to my expectations.
While I still hope for a quick death in a plane crash or a fatal brain aneurysm (joking, but not entirely), I treasure the opportunity I have been given to not waste the life I have. I do not fear death. When the time comes, I will be content that I have lived my life to its fullest.
After 31 years in the financial industry primarily managing hedge fund strategies, Susan Kobayashi currently focuses on small, hands-on ways to make the world a better place. She raises capital for Nihonmachi Little Friends, a Japanese, bilingual, multi-cultural preschool. Susan also relays unwanted food from businesses to the hungry and supports the Mets in the City metastatic subgroup of Bay Area Young Survivors. Susan has two children, ages 20 and 24, as well as a 5-year-old Shetland Sheepdog rescue dog. She and her husband live in San Francisco and avidly practice Iyengar yoga.