This journey is strange because it is deeply personal yet public. I have immensely benefited from the love that surrounds me by sharing my journey, and yet it can be lonely because no one but me can actually do the hard things. And there seem to just be so many hard things! 

This past month, my oncology team and I have been making decisions about my plan for treatment moving forward. A lot has gone into making these decisions because there is no set pathway for someone my age with a rare cancer diagnosis like cholangiocarcinoma. 

My 6 month staging CT scans showed continued treatment response — this means there was additional tumor shrinkage and no new areas of lesions that can be detected at this time. Because I have so far physically tolerated the combined chemotherapy and immunotherapy, we decided to continue with the same treatment plan with close monitoring.

Dennis and I also visited MD Anderson in Houston this week to meet with one of the most highly regarded oncologists in cholangiocarcinoma. The team there did additional blood lab work and also had me do a bone scan. They will review my case to determine if I qualify for some targeted treatments in addition to the systemic chemo/immunotherapy I’m doing in Rochester.

At some point, it is an inevitable outcome with the type of cancer that I have that my current treatment will stop working. We know this and we are doing everything in our power to prepare for next steps which may include other medications, procedures, or enrolling in clinical trials. The reality is that my cancer must be thought of as a chronic condition that we will continue to treat as things evolve and possible new treatments become available. 

But right now, today, I feel really good! I am able to wake up every day and do mostly everything I want to do- maybe not everything I used to do, but I can really do a lot! We are very busy as May is a prime month for sports, celebrations, and all the things. There is nothing else I would rather be doing than these activities for and with my children, and I’m so grateful that I feel good enough to do even previously mundane things like driving kids up and down the main road in town….I love it! 

This journey is full of bumps and setbacks and really hard moments. Acknowledging these hard moments, does not mean I am without hope. I am hopeful each and every day. Don’t worry, sometimes I am also still sad and mad and really really disappointed. But even still…I have hope! These feelings can all coexist. In fact, the coexistence is a really beautiful thing. For example, would I ever have imagined that bringing my daughter to chemo with me because she turned 14 would be something that brought me immense joy? And yet, it did. It was a beautiful moment in an ugly situation.

To sum it up, I think Queen Taylor Swift says it well: 

“I cry a lot, but I am so productive, it's an art.

You know you're good when you can even do it with a broken heart.”