Remembering Scott

Last month, I went to Key West to celebrate my sister's birthday. We previously visited Key West with Scott and my whole family for my 40th birthday [REDACTED] years ago, and it was one of my happiest weekends ever. If I could relive one day of my life again, it would be that day. I was looking forward to going back to Key West this year (especially in the dead of winter), but I was also wary of the memories it would bring back. I was back in this sunny paradise and everywhere I looked, there were memories of Scott. I saw him sitting at a table at Latitudes restaurant on Sunset Key, cheerfully sweltering in the sun. We got lobster rolls, stone crab claws, and Key lime pie from Eaton Street Market, which he loved. Each day I walked by the table next to the hotel's swimming pool, where I sat on his lap one morning after breakfast. My sisters and I ate breakfast sitting on the dock near the Southernmost Beach Cafe, where Scott was when he told one of them that he had

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

For #GivingTuesday, and in honor of Scott's birthday, I am starting a fundraiser for the Pheo Para Alliance, an organization that supports patients with pheochromocytoma or paraganglioma, which is the rare cancer that Scott had. Over the last year and a half, I've gotten to know this wonderful organization and met some of their board members. They organize helpful conferences to educate thousands of patients and caregivers around the world on the latest medical treatments and how to manage their symptoms. They designate Centers of Excellence for patients to identify where to go to find specialists, which is critical for a cancer this rare. They aid in research by helping to provide tumor samples (again, critical for a rare cancer) and collaborating with the Broad Institute on creating a cancer dependency map for pheo/paras which currently does not exist. Having a rare disease can be extremely isolating when you don't know anyone else with the same condition or

Image from https://www.britannica.com/topic/Orion-Greek-mythology So I'd do anything to cry I'd do anything to cry Let this pain fall from my eyes And let time heal my insides - "Song for the Painter" by Lost in the Trees It's been six months. I haven't written in a while because I've been traveling or visiting with family and busy with work and other new projects (more on that in a future post). The first few months passed agonizingly slowly but the last few months have sped up a bit. For about the first 4 months, there was constant and acute grief. At first it felt like I was starving for air. One time during the summer, I saw a small fish taken out of a lake and watched its sides heave for air and thought in a numb sort of way, "Hey, that's how I feel." Later that feeling subsided and it felt instead like I was in emotional traction and every bone in my body was broken. I had everything in place to support me and get better, but I still

November 2014: When asked to do a Facebook "black and white photo challenge," Scott responded with this picture with the following story. I always loved his creative humor and this is among my favorite posts from him. "The death march of the black and white photography day 4. One more day to go. I wanted to avoid using photos from my personal life, but I thought this shot was interesting and well composed. This is a picture of one of my ex-girlfriends. I know you're all wondering why she's shopping in a supermarket with a deer, but the deeper question is how could a girl like that let me go? We tragically fell on opposite sides of the great Console War of 1992. She kept sniping me about the superiority of Blast Processing ("the Genesis has more advanced chip design that makes the Super Nintendo look like an Atari!") and how that "Altered Beast was a really fantastic game". I loved her, but our arguments became increasingly bitter until one nig

Photo from https://pawilds.com/the-wonder-of-our-pa-wilds-dark-skies/   "In one of the stars I shall be living. In one of them I shall be laughing.    And so it will be as if all the stars were laughing, when you look at the sky at night." - The Little Prince, Antoine Saint-Exupéry In July 2016, Scott and I drove to a dark sky reserve at Cherry Springs State Park in northern Pennsylvania. Scott had mentioned a few months earlier that he wanted to see the Milky Way, and I thought it would be a fun trip to do together. Cherry Springs was the nearest dark sky reserve, far away from towns and other sources of artificial light, and we picked a summer weekend that coincided with a new moon for optimal viewing conditions. We brought a picnic dinner, arrived before sunset to find a spot on the stargazing field, and waited for night to fall. There were about 100 people on the field, but it was large enough that there was plenty of space for all of us to spread out. As the sky dar

This week is Pheo Para Awareness week. Scott's cancer was metastatic paraganglioma (or "para"), an extremely rare cancer that in his case was caused by an even rarer genetic mutation. There is a closely related condition known as pheochromocytoma, or "pheo". Pheo/paras are a type of neuroendocrine tumor that can cause the excessive release of catecholamines, which include adrenaline, that prepare the body for "fight or flight" reactions. Symptoms can include high blood pressure, anxiety, heart palpitations, sweating, and headaches. Scott suffered many of these symptoms for years, and it is likely that his tumors developed over many years since they are typically slow growing. It is highly unlikely that Scott's cancer could have been caught early since he never had another reason to get a scan, his routine blood work always came back normal even at the time of diagnosis, and his symptoms were general and associated with other health conditions that

3 months. Yesterday I received a Gundam kit that Scott had pre-ordered months ago. Today my aunt received her new Eames chair, inspired by Scott's beloved Eames chair (a story that I will share at a later time). At the 2 month mark, I donated to causes that he supported and plan to continue doing so. So it's interesting to see what effects Scott still has in this world.  As for me, I would describe my current state as walking through a valley that I hope will turn out to be a path to healing. I have many people walking with me, but in some ways I must experience parts of this journey on my own. I think I am going in the right direction and have been picking up new tools/perspectives along the way but have a long way to go. There is no way around this; I must walk through it. So I do, on the faith that better days will come. I've been compiling pictures/videos of Scott so they can be accessible for family and friends. Here is a video that I made for his celebration of life s

  “To plant a garden is to believe in tomorrow.” -Audrey Hepburn   Yesterday I picked the first harvest from my deck container garden - a handful of shishito peppers. I got a late start on my garden this year but am amazed that I even have a garden after all that has happened this spring and summer. I looked at the fresh peppers in my hand and thought of Scott. How I wished that he could be there to share them with me. He loved shishito peppers and wanted several plants so we would have lots of them to eat. Neither Scott nor I were adept at gardening. In the spring of 2020, we started it as a pandemic hobby with a hot paper lantern pepper seedling that produced many glossy bright red/orange peppers that summer. It's weird to describe a plant as charismatic, but we both agreed that somehow it was. The peppers were deliciously spicy and fruity and Scott learned how to make a fermented hot sauce with them. He was so proud and happy the day he made his first batch. He love