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Living with brain cancer

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Tag: Palliative Care

Posted on October 26, 2019

2019 EndWell ePatient Ambassador

This year I am serving once again as a patient ambassador for EndWell. EndWell is an innovative symposium to transform the end-of-life into a more human-centered experience. My time with EndWell last year was transformational, and I look forward to participating in the conference again on December 5th. I recently wrote an article for the …

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Posted on December 7, 2018December 11, 2018

End Well 2018: Talking about what it means to end well helps us all to live well

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Posted on November 15, 2018

End Well ePatient Ambassador

Over the course of the past month, especially after writing my piece titled, "In Thinking About my Death, I Discovered How I Truly Wish to Live," I've heard through the grapevine that several friends are concerned I'm dying right now. To clear the air...I'm not. 😉 I can understand where this worry comes from. I …

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Country stars like @thetimmcgraw are part of the re-imagining end-of-life movement too! We’re all part of this movement because we all face mortality. Tim McGraw is partnering with @narushealth #endwell19 #country #countrymusic #mortality #hospice #cancer #collaboration #palliativecare #innovation #partnership
@meghanmccain talking about the loss of her father @senjohnmccain, dealing with mortality, and grief. As a brain cancer patient, thank you for sharing. #endwell19 #braincancer #grief #mortality #death #braincancerawareness
I’m excited to share that I am now a regular contributor for @curetoday, one of the largest cancer publications in the United States. I’m looking forward to this partnership and opportunity to reach a wider audience! Perhaps best of all is that I get to be animated😉! #bucketlist #cancer #braintumor #braincancer #cancerawareness #writing #writingcommunity
With all my treatments and medications it’s easy to get too fatigued to make a decent meal. I’ve been loosing weight recently, so my mom sent me @barilla protein-fortified pasta. I decided to add a ton of garlic, chicken, broccoli, and sauce to make a delicious high-carb, high-protein meal! #nutrition #braintumor #braincancer #cancer #pasta
Excited to serve as an ePatient Ambassador once again for @endwellsf. Last year was a transformational experience that inspired me to pursue palliative care advocacy, including rotations with an amazing pediatric palliative care attending. All families deserve palliative care. Link in bio to read the full article.
One year of immunotherapy infusions complete. People often ask me how many rounds I have left, and I don’t have an answer. In theory, the best case scenario is that I’ll receive these treatments every three weeks indefinitely since stopping means the treatment isn’t holding back my tumor.
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