April 1, 2021: Duke Cancer Center, North Carolina
“How are you doing?”
I blinked my eyes open, recognizing Dr. Alan Friedman’s voice. Since I didn’t have my glasses on or contacts in, everything was blurry, and the lights were dim. A few moments later, I vaguely understood that my brain tumor surgery must be complete. My last memory prior was being transferred from a wheelchair to a surgical table early in the morning. At that point, a plastic mask was placed over my nose and mouth, and I was told to take a deep breath. That’s it – I was completely out. The eight hours in between involved what can be considered a successful craniotomy – successful in that the surgery removed all visible signs of a tumor in my left frontal lobe. We’d understand more in a few days and over the months ahead. On the drive from North Carolina back to Virginia later that week, we found out that the tumor is malignant – meaning until more effective treatment measures are found, it’s a matter of time before it comes back.
Fast forward exactly a year. The past twelve months have involved a major surgery and recovery process, thirty visits to the hospital for radiation treatment, plus 11 months and counting of continual chemotherapy treatment. I can’t even begin to count how many pills I’ve had to take since surgery, but my estimate is that the number is well over 4,000.
Today, I celebrate a year of life since my tumor removal. I enter the one-year mark of post-operation cancer survival. Today, I also celebrate a year of boundless love, support, and care.
What has changed since my brain surgery on April 1, 2021?
My knowledge about cancer: I knew so little before. Over the past year, I’ve learned so much about cancer, treatments, side effects…and the physical, mental, emotional, and financial challenges and lessons for the patient, caregiver, family, and friends. I’ve launched a blog recently and have written about some of the intricacies of cancer, from a primer on chemotherapy to tips for post-operation head and scalp care. There is still so much to understand, and so much I wish I’d known before. Be Well Now is my attempt to help fill the gap, even in a small way. There are so many types of cancer, and each cancer affects every individual differently. I’m still learning.
Personal circumstances: A year ago, I never would’ve imagined that my partner and I would pick up and move within six months of diagnosis to California. With immediate family in California, COVID allowing for remote work, and an excellent hospital to transfer to, it was the right move. I’ve shifted from my amazing care teams at Duke, Virginia Cancer Specialists, and Virginia Hospital Center to an incredible neuro-oncologist and her team at UC San Francisco. Blessedly, I’ve shifted to less medication than the first six months post-surgery. I’ve changed a bit physically. Since starting chemotherapy, I have lost a good ten pounds. I lost hair due to radiation treatment, but it grew back several months later. It’s been a year, but I still can’t sleep on either side of my head at night due to sensitivity from the incision. Someday, that may change.
COVID and the world around us: During my first hospital stay of three days in March 2021 after the grand mal seizures that trigged my brain tumor diagnosis, I was still unvaccinated. Most of the adult US population was just becoming eligible for vaccines at the time. Luckily, and with a lot of family help, I was able to get my first shot a week prior to surgery, which provided some reassurance that I was at least slightly protected. I’ve since been thrust into the category of immunocompromised individuals who have been first in line for the second shot and booster shots. Living in the COVID enveloped world of 2020, I’d already been cautious. 2021 made me extremely cautious, and most social experiences were limited to ZOOM through much of 2021 and spring 2022. The possibility of infection has loomed large over my cancer experience, as has the suffering of so many individuals. These days, my thoughts often turn to the suffering in Ukraine as well.
What has remained the same?
Commitment to veganism: At my time of diagnosis, I’d been vegetarian for about 30 years, and vegan for the previous seven. That hasn’t changed! One of the best things I can do for myself and for the planet is to fully engage in a vegan lifestyle. I was blessed with a very helpful dietitian at Virginia Cancer Specialists who shared excellent tips for upping the protein intake during chemotherapy. While it wasn’t the easiest thing for me to do, I stick with the program.
Commitment to my job: I’m blessed to work at a mission-driven organization and blessed that I was able to come back several months after surgery. I appreciate and value my colleagues, our partners, our programs, and the people we work with around the world to build more just, prosperous and inclusive societies. It’s a gift and privilege to work at IREX that I don’t take lightly.
Love from and for family and friends: I’ve experienced first-hand the incredible generosity, concern, care, and love of family, friends, and colleagues throughout the past year. It’s been nothing short of incredible. My own love and appreciation for those close to me has grown as well. I acknowledge these blessings every day.
Appreciation for Yoga: Prior to diagnosis, I’d been an avid yoga student for well over 10 years. There are so many aspects of yoga that I appreciate and integrate daily even more now than prior to cancer. While I’m steadily getting my physical practice back to pre-surgery form, I’m not in a hurry. There are some physical postures that, in fact, may no longer serve me. And that’s OK. I have embraced mantra meditation and different forms of the practice. I’m very grateful to my teachers, friends, and mentors in the yoga community. Each morning, I consciously thank God for the chance to wake up, take a deep breath, and live another day.
What lessons have I learned?
I’ve learned so much over the past year. While a cancer diagnosis is really, really hard, it’s something that I’ve learned to adapt to…with a lot of help. I know that despite this terrible diagnosis, I am so fortunate to have access to a top-notch neurologist and her team, as well as no problems with timely treatment and medicine. Sadly, so many people around the world don’t have such access. I have learned the importance of supporting organizations such as Oligo Nation for their critical work on behalf of patients and their families. On a practical level, I’ve relearned the importance of diet, movement, nutrition, and whatever helps to keep spirits up – whether it is prayer, meditation, exercise, quiet time in nature…or all of the above. In the world of navigating cancer, I’m far from alone. I’ve highlighted a few of the incredible organizations supporting individuals with cancer on my blog.
I’ve learned that living with hope is a lot more enjoyable than living with pessimism. For me, my loved ones, and for so many others, I hope with all my being that scientific advances and breakthroughs continue in the realm of cancer treatments and cures. I’m hopeful for long-term survival.
What do I want to share most with the world right now, after a year on this path?
I’d never (knowingly) met anyone with a brain tumor prior to my own diagnosis. It’s OK to talk about cancer, and I wish more people would. Cancer can – and does – affect people from all over the world. It knows no boundaries – geographic or other. There should be no shame in a diagnosis.
I want people to know that it’s OK to ask questions to people with cancer. The more we demystify and destigmatize cancer, the more room we allow individuals with cancer to live honest and open lives, to reach out for help when needed, and to feel comfortable speaking up to share resources and experiences with others. It’s also OK to ask people with cancer about other areas of their lives. An individual with cancer is first an individual, just like anyone else. If you’re reading this and are wondering more about my cancer experience, please feel free to get in touch – I welcome dialogue and learn from it too!
So…that’s where I am at today, one year down this windy road. I’m still in treatment. I get blood work done twice a month, am in chemotherapy for five days a month, and feel the side effects of these treatments to different levels every day. I am concerned about the long-term side effects of chemo and radiation, but am just incredibly grateful for my medicine, support network, and treatment program.
What’s to come further down the road, who knows. The truth is - none of us know. Today, it’s time to celebrate getting through this year intact and seeing an end to chemotherapy on the horizon in a few months. We'll have homemade vegan pizza for dinner tonight, and I'll take a long walk along the bay in the meantime.
Cheers to year one, and cheers to many more to come. Thank you for being a part of the journey.
April 1, 2022
Photo: 1 YEAR written by stick in the sand, Marina Bay, California
#oligodendroglioma #braincancerawareness #braincancersupport #BTSM #bewellnow #cancersurvivor #braintumorsurvivor
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