A Matter of Hope, Vacation, and Mini-Life Update
What happened to August? No idea. What happened in August? Everything. So much to talk about, I don’t even know where to begin. We’ll start with the obvious, my passion project, A Matter of Hope.
Leading up to A Matter of Hope, I had this really calm assurance that everything would work out how it was supposed to.
Trust me, after spending months pivoting, changing plans, and looking for ways to make this work, my random optimism was personally quite refreshing. I guess I felt like we did everything possible to make this successful, and at the end of the day, that’s all that mattered. It helped that we surpassed our initial goal weeks before the event actually happened. I honestly get choked up talking about the extensive support we received. We raised OVER $20,000 for the Cholangiocarcinoma Foundation; that’s 2.5X our initial goal. Additionally, we had 33 recognized hubs, and over 200 people tuning in on August 15th to help us raise awareness and hope for the Cholangiocarcinoma community. Matt basically got his own holiday and made a real difference. Legendary.
But before we arrived at #MoHope2020, I had to survive Matt’s birthday; his first birthday in nine years we’d spend apart. It was pretty rough. I focused on the event and preparing for that; it helped distract me from the painful void. It’s still surreal and yet, it’s the reality I’m slowly accepting. I mentioned in Our Cholangiocarcinoma Story that Matt’s birthday was the last time I actually saw him happy. These coming months last year were, by far, the toughest months of my life. I sit here today, in genuine awe that I made it through them. I guess I had to; there was no choice. It wasn’t about me. I’ve never considered myself the “strong one,” but I guess no one really understands their personal strength until it’s tested. So, here I am. Another “first” down. A lifetime to go.
Now, back to the A Matter of Hope event.
From tank top pictures, to virtual scavenger hunt photos, to an amazing musical set streamed by one of our favorite Baltimore bands, Soundtown, the day was, in fact, the document-the-day caliber Matt deserves. Personally, all the stories shared about Matt and the manifestation of his spirit, not only that day, but in all the months leading up to it, really made what could have been an incredibly dark weekend (and trust me, there were moments), a weekend of celebrating everything Matt gifted us; amazing memories, laughable moments, and a FIRE to continue fighting this disease. I will never be able to thank our community enough for the support, especially my rockstar team. It would have been impossible to pull it off without the buy in of many, and the dedication of a few.
I’d like to share an excerpt from my opening speech, as it really hits on our “why.” One day, the sting won’t be as fresh, the noise of fresh grief will be more muted, but the need will still be there. A Matter of Hope is only in its first year, friends; and a tough year at that. At the very least, I hope our story shed some light on an all-too-often overlooked community of rare cancer warriors, and motivated you to continue raising awareness and funding for Cholangiocarcinoma and other rare cancer research. This is not a one time thing. Clinical trials cost millions and millions of dollars. This is why we MUST continue to fight for progress because, to be quite frank, any of us could have been and could one day be in Matt’s black, velcro, hightop shoes.
“Lack of attention means lack of funding means lack of research means lack of options. Being diagnosed with any form of cancer is traumatic; being diagnosed with a rare cancer is devastating. I stand here today, to assure that when Matt was diagnosed and when Matt died, he was not the only person shattered….
And we are one story. We are one incident of loss. There are hundreds of thousands of rare cancer stories like this every year. From 2012 to 2016, 75% of clinical trials did not include any rare cancers by name. As of 2018, 79% of cancer patients lacking an FDA-approved targeted therapy had a rare cancer. In regards to Cholangiocarcinoma, the rate of incidents and the rate of mortality are RISING. In a 2017 survey, liver and cholangiocarcinoma had THE highest percent increase in mortality rates and the second highest percent increase in # of cases of all cancers. My aunt, a breast cancer survivor recently posted something on Facebook that I’d like to share. She said “Being a breast cancer survivor myself, I am a big supporter because I am alive to be a supporter. It’s all due to years of research that can save lives now. We need to continue this fight to beat ALL cancers.” I will repeat that phrase again “we need to continue this fight to beat ALL cancers.”
Don’t worry friends, I wanted to make sure that we really stuck to Matt’s fun-loving nature throughout the event, which I hopefully conveyed when I urged everyone to get a little weird. If you did partake in A Matter of Hope festivities, thank you. The wheels are already turning on what we can do over the next year to keep the fun-raising alive and get ready for #MoHopeXXI. To be continued.
A Matter of Hope wrapped up, and we headed north for a much needed beach vacation.
At the beginning of the year, I had this whole vision of just traveling. I’d maximize my PTO and take Bryson on the road (or in the air). Of course, a worldwide pandemic decided that was not in the cards this year, so a small beach vacation would do. I am not sad about it.
I needed that break. I needed a break from work, from fundraising, from the computer screen and, frankly, from using my brain…at least for deep thinking. The last two years have been physically, mentally, and emotionally taxing. Always something urgent; Always something that needs attention. Always something causing anxiety or sleepless nights. This was my first break. Of course, Bryson kept me entertained for much of the trip, fearlessly charging toward the mighty waves of the Atlantic. This was his first beach trip as a walking man, and boy did he take advantage of that.
As I alluded to in a social media post, it was hard not to think “Matt should be here.” He should be holding Bryson’s hand as he battles the waves; he should be sitting next to me around the fire pit with a glass of wine (or beer) while Bryson sleeps peacefully after a fun-filled day. We should be going on beach walks together, and I should definitely hear him complaining that vacation is meant for relaxing not exercising when I push another walk on him. But alas, I can spend my entire life in the “should be” phase, when reality paints a much different picture. I do believe he was with us, to some degree. I could feel it standing in the ocean, with the waves crashing and sun peeking over. Perhaps he was letting me know he was there and asking me to stop focusing on the “should be’s.” I believe in signs and I feel like I had many of them by the ocean.
We continue to grow from here.
Vacation allotted me the opportunity to clear my head and start focusing on some open ended questions looming in the back of mind. I knew this year would be a year of adapting. It’s a year of change; a year of grieving, but learning how to move forward with that grief. I’ve experienced many seasons over the course of two years. Now, we enter a new one. To help me through this, for the first time, I hired a life coach. My particular life coach, Krista St. Germain, is a young widow herself, and specializes in helping widowed moms move forward and even experience, gasp, post-traumatic growth. As most of my loyal readers know, I have always been a fan of self-development, and one of my favorite areas of study is thought work. If you listen to the Life Coach School Podcast or UnF*ck Your Brain (one of my personal favorites), you know the type of work I’m talking about. Krista, a Master Certified Life Coach, follows this model and I am so excited to practice with her and work through some of the thoughts I have around circumstances in my life. Which thoughts suit me and which thoughts don’t? Time, and some serious inspection of my own thoughts, will tell.
I also decided that I’d continue on with OneHope. I really enjoyed pulling together the A Matter of Hope virtual wine tasting and using these tasty, award winning wines to raise money not only for the Cholangiocarcinoma Foundation, but other very worthy nonprofits. My entrepreneurial spirit is bulldozing through, and I’m pumped to build a team of other cause-centered winos, selling wine that supports the nonprofit world. As a solo mom now, having an extra income stream does not hurt. It’s a win-win for me. Feel free to check out my OneHope page for more detail on hosting a wine event, purchasing wine from me, or joining my team of cause rockstars.
I have a big life update heading your way, but I have some logistical things I need to tend to first. Want to guess what it is? Feel free to comment here or on social media, but be aware, I won’t confirm whether you’re right or wrong. As I close out this recap, I just want to give one extra special shout out, again, to my A Matter of Hope committee: Lindsay, Judi, Alley, Jenny, Megan, Deni, Drew, Tim, Lia, Heli, and Mike. To say I am proud of this group is an understatement, I am honored to have led a team that persevered, dug in when it mattered most, and truly put Matt at the forefront as our motivator to make this happen. Congratulations to team Sturbridge on winning the Social Media Scavenger Hunt and to Team Northford (led by Melissa, with their life size Matt cutout) for winning the Best Hub. To our A Matter of Hope community, this is only the beginning.
Until next time,
Xtina
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