Remembering Scott

This week, I joined 800 people from all 50 states for Rare Disease Week at Capitol Hill ( https://everylifefoundation.org/rare.../rare-disease-week/ ) to meet with our representatives in Congress and advocate for legislation to improve access to treatments for rare diseases. Before today, I had never met with my Congressional representatives or their staff. Part of my motivation comes from what Scott and I went through when we realized how few effective treatments there were for pheochromocytoma/paraganglioma (pheo/para), his rare neuroendocrine cancer. Facing that reality, and seeing Scott realize it, is something that I can never forget. This is a common issue for people battling rare diseases. About 10% of the U.S. population has a rare disease, and less than 5% of rare diseases have an FDA-approved treatment. The only FDA-approved treatment for metastatic pheo/para, Azedra, was developed under the Orphan Drug designation but was recently discontinued by its manufacturer Lantheus du

When I re-read my 18 month post, I am struck by how well I thought I was doing, and also that I had no idea what was coming next. At 18 months, I was mostly done with my house projects, getting involved in new projects that I cared about, and feeling the strongest (although still not ever the same) I'd felt since Scott's passing. Then the following month brought me to the darkest point I'd felt since Scott's passing, and I found myself wondering if I had made any progress at all. I had a health scare and was called back for follow-up scans. I knew that it would likely be fine, but the week-long wait between my initial and follow-up scan brought back traumatic memories of when Scott was getting his scans and diagnosis. I also felt terribly vulnerable when faced with the possibility of having a health crisis. I didn't have to imagine what battling cancer would be like. I already knew. I saw firsthand the devastation of the diagnosis on the patient and family, the prog

  18 months after losing Scott, I am still processing the trauma of his diagnosis and realizing how few effective treatments there were for him and feeling completely helpless to stop his disease progression. Last August, the company that manufactures the only FDA approved treatment for metastatic and unresectable pheo/paras announced that it would cease production due to lack of profitability. To remove one of the already few treatment options (and the only one that was FDA approved) is devastating news for the pheo/para community. Scott was able to get Azedra, and while it ultimately did not have the hoped for outcome, we were thankful that it was an option for us at the time. I've since joined the Pheo Para Alliance's Advocacy Task Force to look at expanding treatment options for patients. There is hope for better treatments in the years to come, but that will not help the patients who are in need of treatment now. I was happy to be able to moderate a panel with medical expe

In honor of Scott's "birthday season," I am launching a fundraiser for the Pheo Para Alliance, which supports patients and families battling the rare cancer that Scott had. The night that Scott and I realized how few effective treatment options there were for pheo/paras because of how rare it is, and how bleak the prognosis was, was one of the darkest moments of my life. Nobody should have to go through that, and nobody should have to feel alone when they find themselves on that journey. The Pheo Para Alliance provides excellent information and resources for patients and caregivers, including their Centers of Excellence program which helps patients identify the nearest hospitals that specialize in treating this rare cancer. They provide a supportive community for patients and families and connect them with researchers and medical providers. They do all this with extremely limited funding, with a team of dedicated and resourceful volunteers whom I've gott

“It turns out life isn’t a puzzle that can be solved one time and it’s done. You wake up every day, and you solve it again.” – Chidi Anagonye, The Good Place It's been 18 months. I miss him so much. After the one year anniversary, the monthly anniversaries started feeling less acute, to the point that I didn't remember what day it was last month until it was almost over. I think that's a good thing, because I don't want to dread the 17th of every month like I did last year. But today hit harder. I'm still living with the trauma of Scott's illness and death, and I will carry that for the rest of my life. Something inside me became irrevocably broken when I lost him, and yet I've somehow learned to keep moving in life, mostly because I have to and also that's what I promised him. My house journey seems to have aligned roughly into 6 month phases. One year ago (6 months after I lost Scott), I was buying this house and wondering if I was ready to

Around this time a year ago, I was looking at Zillow as a distraction (as one does) and saw a listing for a house near my work. I was 6 months out from losing Scott, and my plan had been not to make any major life changes for the first year. But something about the house felt compelling and I decided that I should take a look at it. Two days later, I saw the house. I was sort of hoping that there would be something obviously wrong with it so I could go back to my daily life and not have to confront any potential big decisions. But the house and the neighborhood seemed lovely, and for the first time in two years I felt excited about something. I spent the next few days in a frenzy of research and thinking about what I wanted to do.  A week after I first saw the listing (with no idea that I was about to buy a house), I went under contract. The day that I signed off on the offer, I went to visit Scott and asked him to let me know if I was doing anything too crazy. I wished so much that he

Last week I recorded a podcast episode with my friend Erika, who knew Scott in high school and connected with me after he passed away. It includes stories about Scott and what he meant to me, my grief journey, the challenges of fighting rare diseases, and how I miss hearing him go on about the NBA and Legend of Zelda. Spotify: https://spotify.link/IDLlDniqNDb Apple: https://podcasts.apple.com/.../every.../id1670869554... YouTube: https://www.youtube.com/watch?v=zFkksMp6IxA   View this post on Instagram A post shared by Every Moment is a Choice (@every_moment_is_a_choice_)

  Seven years ago, Scott made this fake "First Book of Worms" cover for our friend's daughter's 4th birthday. She was very happy to learn that her present was not a book of worms after all.

Last November, my Dad told me that he wanted to see Neuschwanstein Castle, Salzburg, Vienna, Lake Hallstatt in Austria, and Venice. He also noted that he was 81 and that he "needed to do these things quick." I was in the middle of unexpectedly buying a house and not exactly in the mood to plan a big family trip, but my sisters and I agreed that we needed to make this happen. (Side note: Never underestimate the power of clearly communicating your wishes and expectations in your relationships.) I think the pandemic and Scott's illness made us all realize how uncertain and fleeting life can be, and that we needed to seize every opportunity to make happy memories together. So I'm grateful that I was to be able to go on this trip with my parents and sisters over the past two weeks. We started with a guided tour through Munich, Salzburg, and Vienna. My sisters joined us in Vienna, and we did a day trip to Hallstatt and then took a train to Venice. Early in the trip, I had a

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.