I’m sitting at a coffee shop in Berkeley - it’s a sunny Saturday morning. It’s just a few days away until April 1st, the second anniversary of my craniotomy. Two years! In some ways it seems like such a distant dream - the blur of March 2021 that led to diagnosis, and the trips back and forth to Duke in North Carolina for surgery consultation and preparation. Then going to the hospital for the actual surgery, returning home, radiation and chemotherapy…and additional monthly chemo that stretched through to June 2022. All amidst the COVID-19 pandemic. In some ways, it’s all a dream, and in others, I’m reminded of my brain cancer every day in one way or another. Usually, it’s at 5:00 a.m. and 5:00 p.m. when I have to take medicine. Some days, I catch a view of the scars across my head when looking into a mirror (side note: when I grow my hair out, they’re really not visible). The biggest lingering side effect I still have is fatigue, which is very common among many cancer survivors.
This year’s craniotomy anniversary (or cranivesary, as known in the brain cancer community) is much different than last year’s. I was still in active treatment at the one year mark, and while it was a joyous occasion, there was still so much sadness around the situation. Still, we ordered a vegan cake, and catered a picnic for family in the park. This year, I can honestly say that while the sadness and fear do rear up on occasion, that there’s much more of an acceptance of the reality of the situation. Out of something very difficult, a new reality has emerged, and it’s one that includes new community, continued support from family and friends, inspiration, encouragement, and love.
Through my cancer diagnosis, my family and I have become a part of the Oligo Nation community - an NGO that works relentlessly to advocate for and fund research for more effective oligodendroglioma treatments. We’ve hosted a virtual 5K in 2021 and in-person 5K in 2022, joined by friends and family from literally around the world for both events. We’ll join other Bay Area families affected by oligodendroglioma and hope to host another event in 2023. Each individual’s contributions make a real, concrete difference. Meeting other survivors and their families and friends at these events has been both powerful and emotional. We share a connection we’d rather not have, but it’s one that instantly invites a call to support and uplift one another.
Since diagnosis, I’ve discovered yoga4cancer, completing their 55-hour certification in 2021 and currently auditing their expanded 75-hour program. Yoga4cancer’s oncology yoga program and approach have provided me with much more than a safe and effective yoga practice over the past two years. The yoga4cancer teachers instilled a sense of confidence in me that I can continue my yoga practice, and reminded me of my own strength in a time of need. I bring some of the tools I’ve learned from the method to other classes that I take and teach. I’ve also benefited from amazing classes and gifted teachers at Magnolia House, Tower Cancer Research’s survivorship support program. I look forward to continuing my journey over the year ahead with yoga4cancer and hopefully starting my own classes for other survivors.
It’s a gift to live close to family again after so many years, and a gift to work remotely for an organization that I strongly believe makes a positive impact in the world. I feel blessed to still stay in touch with dear friends, mentors, teachers and students in the yoga community in Washington, D.C. and around the world. It’s been a gift to travel again, both for work and for personal reasons...even to Kazakhstan and Lithuania! Who would've imagined just a year ago.
I’ve heard from other individuals with cancer that cancer can shift perceptions and priorities. The same rings true for me. I’ve always loved to travel, explore languages, learn about others’ customs, cultures and cuisines. Now, I feel a drive to do this even more while able. I have lots of plans on the horizon.
I remain grateful to my medical teams. I am so grateful to my neuro-oncologist, Dr. Jennie Taylor, and the whole team at UCSF who have taken over my care since fall of 2021. You can’t really get used to MRI scans, but at least I know what to expect and I know the drill when I get them. At this point, I still go for scans and check-ups every three months. Thus far, the scans have been ‘‘clean’ - meaning no visible tumor progression. I wholeheartedly hope and pray that the scans remain as such for many years, and that science progresses in the meantime. That’s part of why I’m so dedicated to Oligo Nation - it represents hope for me & my family, and hope for other families.
At this two year mark, I’m still extraordinarily grateful to the team at Duke led by Dr. Allan Friedman, who performed a full resection of my brain tumor. I am grateful to my entire family and so many close friends for being by my side (literally) throughout the surgery and recovery process. I am acutely aware that many individuals with other types of brain cancer unfortunately don’t even live to the two-year mark post-surgery. To me, this underscores even more the need for further advocacy, research, customized treatment, and cures for the many different types of cancers that exist.
Looking back, and looking forward with optimism
It’s hard to believe that just over two years ago, I knew literally nothing about brain cancer. While not an expert, I’ve since learned through direct experience and research so much about cancer diagnosis, treatment, side effects, and the physical, mental and emotional toll that cancer takes. I’ve also learned how extraordinary it is to be the recipient of so much love, support, generosity, and excellent care over these two years. I feel very much at ease and healthy, even amidst this hidden disease. I hope that in some small way this blog can continue to be a resource to others, particularly for individuals who may have just been diagnosed or are in the midst of treatment, and for their family members.
Cheers to two years!
Photo: On the San Francisco Bay Trail, Marina Bay, Richmond, CA, March 26, 2023
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