Where have I been, some of you have asked? Busy kicking cancer’s ass for the past four months! Leave it to me to get a rare form of cancer, called adenoid cystic carcinoma (ACC), in a minor salivary gland at the juncture of my hard and soft palate. Only four in one million people are diagnosed with ACC annually. And all this time I thought I was one in a million!
That quip is the first line in this educational announcement video below that I’d like for you to watch.
I made the video in April, just hours before I underwent surgery at UCSF to remove part of my palate and jaw, to share how my ACC was discovered, who gets it and why, the survival rate and what’s ahead for me. It’s part of my effort as a patient advocate so expect to hear/read more from me about ACC and head & neck cancer in general.
When I made the video, I wasn’t 100% sure radiotherapy would be necessary. Because the surgical pathology report showed that cancer had invaded the bone and nerve (perineural invasion), radiation treatment was recommended to give me the best chance to beat ACC, which likes to hop around on nerves. Thankfully, I practically breezed through 30 rounds of radiation over a six-week period in San Francisco. On August 3rd, I “graduated” and rang the bell to celebrate the end of my cancer treatment. Woo hoo!
Thank you, God, for blessing me with the ability to research and stay positive, incredible willpower, an amazing medical team at UCSF and family and friends who prayed for me and supported me through what I pray will be the worst part of this journey.
I can’t give enough credit to twice weekly acupuncture for getting me through radiation with no nausea, no fatigue and minimal pain. I never lost my sense of taste or ability to swallow, both common side effects for head & neck cancer patients going through radiotherapy. And I gained nearly 15 pounds because I overate out of fear of getting too skinny! During radiotherapy, I had so much energy that every Friday after treatment, I drove home to Yountville to sleep in my own bed, take healing vineyard walks and eat takeout from my favorite restaurants then drove back to SF every Sunday evening for another five days of treatment. (I even rode my Peloton after finally getting my seat post! Don’t get me started on the poorly handled recall!!) I don’t write this to brag but to inspire and encourage you to exercise, be strong and be positive so when you are faced with a battle, you are armed.
Now that I’m home for good, I’m focusing on healing my traumatized mouth and resting for the next few months. God is good!
Learn more about my cancer journey
Learn more about ACC and donate to the Adenoid Cystic Carcinoma Research Fund
