Remembering Scott

In my widow support groups, there's a lot of discussion about coping with the holidays, especially the first one after losing our loved ones. I approached this year's holiday season with some dread, not knowing how I would be able to cope emotionally.  Last Christmas, Scott's family came to Baltimore since Scott needed to stay near home to get blood transfusions for his low hemoglobin. We got him a transfusion one morning and then headed to the Airbnb where the family was staying. Scott was often tired after a transfusion, so he took a nap at the house and told us not to wait on him since we had a gingerbread house decorating contest that afternoon.  I had been doing mostly OK so far, but as I looked down the dining room table at the couples and families putting together their gingerbread houses, I knew that this was my future, that one day Scott would no longer be with me on Christmas. This realization hit so hard that I wasn't sure if I was up for doing the...

Informative Washington Post article on one patient's journey to getting diagnosed with pancreatic neuroendocrine tumor (or PNET). The average time from onset of symptoms to diagnosis for PNET patients is 7 years, with the delay resulting in the possibility of the cancer becoming metastatic by the time of diagnosis. In Scott's case, he was initially misdiagnosed with PNET and was later diagnosed with a related but even rarer cancer called paraganglioma, which was confirmed by a review of his biopsy and genetic testing. This is illustrative of the huge challenges in correctly diagnosing and treating rare cancers and other diseases. Fortunately for this patient, her persistence resulted in her catching the cancer at Stage 1 and having it surgically removed before it could spread. https://www.washingtonpost.com/health/2022/12/17/stomach-pain-symptoms-diagnosis/

  I want to thank everyone who donated to the Facebook and email fundraisers ( https://secure.givelively.org/donate/pheo-alliance/donate-to-support-your-pheo-para-phriends-on-giving-tuesday/bessie-lewis ) for the Pheo Para Alliance in honor of Scott. The response completely blew me away - we raised just over $3,000 between the two fundraisers. The total Giving Tuesday donations for the Pheo Para Alliance was about $9,000, and the fact that Scott's fundraiser alone raised a third of that amount warms my heart so much, and I think it would have meant so much to Scott. $3,000 may not seem like much, but it makes a tremendous difference for the Pheo Para Alliance which is a small organization run mostly by volunteers. These funds will allow them to provide information and seminars to educate patients and their families on pheo/para symptoms and treatments. Because the symptoms are often general (anxiety, high blood pressure), it can be very difficult to diagnose this condition correctl...

It's been a difficult week. Last Monday, my supervisor John passed away suddenly from complications due to a cancer similar to Scott's cancer. John's passing was difficult because it brought back memories of the grief from the early days of when I lost Scott, and also because of what John meant to me. My work created a forum for people to share stories of John, and here is what I wrote about him: "As an early career staff member, my first impression of John was that he was an “important sector person” who was somehow able to run a branch, get his PhD, and manage his bike shop(s) all at the same time. I didn’t really get to know him until 2016 when he became my branch supervisor. John saw career opportunities for me that I never envisioned for myself, and he mentored and encouraged me as I developed as a leader. He built a strong and diverse branch leadership team and cultivated a positive environment in which all the groups worked collaboratively with each other. Havin...