Remembering Scott

20 years ago today, Scott and I got married in Atlanta. If we had known on that day that we would have 19 years together, I don't think that, in the big picture, we would have changed how we ended up spending our time together. 10 years ago today, Scott and I were in Paris celebrating our 10th wedding anniversary. We had a wonderful time and made plans to go back for our 20th anniversary. Today I sold our townhouse, where we lived for nearly our entire marriage. It feels bittersweet falling on our 20th wedding anniversary, but it also feels fitting. I feel like Scott has been with me on this whole house buying/selling journey, and I feel his presence in the new house. The night that I settled on a price with the buyer, I went to pick up sushi because that's how we would have celebrated. I ended up signing the contract at the local sushi place that we had visited for nearly 20 years. The entrance has a pair of drums that we used to bang on the way out. I hadn'...

Holding hands on a train in Japan, 2019   It's been one year since I last held Scott's hand. Letting go of his hand for the last time was one of the hardest things I've ever done. The last picture of Scott and me is also the last time he kissed me. A kind hospice chaplain had stopped by and asked us to tell her a little bit about ourselves. She prayed for us and ended with the Lord's Prayer. I started saying it along with her, and to my surprise I heard Scott saying it next to me as well. He had started to lose awareness of his surroundings and I wasn't sure what he could understand, but he recited the entire prayer without a hitch. We kissed and the chaplain immediately said, "Well, I have to take a picture of that." She insisted on it, so I handed her my phone and we kissed again as she took a picture. I won't share it here because Scott had lost a lot of weight by then and it might make people sad to see him in his final days. But the ...

Legend of Zelda: Breath of the Wild was Scott's all-time favorite game and the closest to everything he thought video games could be. He told me that he wanted to live long enough to play the sequel (Tears of the Kingdom) so it's bittersweet to see it get released this weekend, almost a year after he passed. As weird as it may sound, I hope he's out there somewhere, somehow, going on adventures in Hyrule.

While we were on our knees Praying that disease Would leave the ones we love And never come again   - "On the Radio" by Regina Spektor It's been 11 months. I'm continuing to make progress in my grief journey, but the upcoming one year anniversary and also memories from this time of year have been hitting hard lately.   Around this time 2 years ago, Scott had his first orthopedic surgery to stabilize his femur due to bone metastases. We were afraid of the toll the surgery would take on him, but Scott's recovery was surprisingly smooth (it helped that he had a world class orthopedic surgeon), he was hobbling on his walker within a few days of the surgery, and he resumed teaching remotely the day after he came home from the hospital. I thought he should take it easy, but he was determined to get back to his students as soon as he could. Soon he was scooting about the house and using his walker more as a comedic prop than a support.   A few weeks after that, he began ...

The spring equinox brings days of increasing light, but it marks the beginning of what feels like my "dark days." All the bad things happened in the spring. Two springs ago, Scott was diagnosed with terminal cancer in March, we were reeling from the devastation of what this meant for our future, and he endured his first orthopedic surgery and radiation treatments. Last spring, Scott entered the hospital for the last time in April and passed away in May. Each spring, as I saw the forsythia and daffodils and cherry blossoms blooming brilliantly as we traveled back and forth to medical appointments, I felt the incongruity of life renewing all around me as Scott's health declined. I hope one day I can enjoy spring and the blooming flowers again without the sadness, but I am not there yet. This spring I am doing what I can to bring light into these dark days. I'm continuing to make my new house feel like home. In February, I added and replaced some light fixtures and had s...

  February 28 is Rare Disease Day. Prior to Scott being diagnosed, I never thought about rare diseases. I thought of cancer patients and families as "those brave people fighting cancer." I never thought I would become one of them, never wanted to become one.   25% of all cancers are rare, as are all pediatric cancers. According to the NIH, nearly 10% of the population have a rare disease ( https://ncats.nih.gov/news/events/rdd ). Of the estimated 10,000 rare diseases, fewer than 5% have an FDA-approved treatment.   Last week a colleague reached out after her father was diagnosed with a metastatic rare cancer. She needed help navigating a bewildering medical system while processing the shock of the diagnosis. Below are some medical lessons I learned when dealing with a rare cancer:   - ***Get a specialist for a rare cancer if at all possible.*** This really is so critical. It may not be at your local hospital, but you can consult with other hospitals on treatment opti...

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...