The past few weeks have been focusing on recovering ( my oh so favorite part), supporting the school musical - Lion King (which went really well) and comparing opinions from various  care teams that may know more about my specific kind of cancer.

First, let me say that gas pain is 💢😡💢! Far worse than the surgical wounds, the gas in my GI tract has been debilitating. Also, hot flashes are no joke! I thought old people were just cranky and set in their ways, but hot flashes are a real pain in the patootie. They are definitely not flashes of heat, but a severe lack of temperature regulation. A huge shout out to everyone who has donated an amazon gift card that allowed us to purchase a large upright fan with a remote. This way, when I wake up at 3 AM I can adjust things without ever leaving my bed, turning on a light, or putting on my glasses. it is nearly impossible to describe how much this has changed my life. To help illustrate the concept: the heater next to my desk has been set to 68-70 for years. It is now at 62. [O.o]

The Lion King production was fantastic and I am incredibly proud of the cast, crew, and community for all of their hard work in making sure this production thrived despite all of the twists and turns we encountered this year. We had four performances and almost all of them were completely sold out. (And with 240 seats for a middle school production - that's an impressive statement!)

Now, for the update I know you're most interested in: what's happening next. It's still not certain. The best way to explain where we are is to lay out the three opinions that we've collected on this journey.

1 -  Northwestern Medicine (NM) - this is my local and primary care team. They are the ones that have been by my side the past two years as I've gone down this journey. They originally diagnosed me with mucinous ovarian cancer back in 2020, were with me when Leonard reappeared this past December, and have done all of my surgeries. In January - when we officially confirmed that this was the same cancer - they told me to start chemotherapy with the standard ovarian cancer treatment -  taxol platinum. They warned me that the response rate for this type of cancer and chemotherapy wasn't great, but that this was still the best path forward.

2 - Mayo Clinic - nothing compares to Mayo Clinic care. They are ranked #1 in the nation for a reason. You feel supported and prioritized every step of the way. I got a second opinion from them back in 2020. This visit mirrored my first visit in that they agreed with the proposed path that NM recommended, but this time they also mentioned an alternative chemotherapy treatment that lacked a lot of data. But the idea is that mucinous cancers are commonly found in the GI tract, so some people think that this specific ovarian cancer should be treated like a GI cancer (folfox). Unfortunately this cancer is rare enough that there isn't a lot of data to support this thinking, but they wanted me to be aware of it anyway. They agreed that chemotherapy would be my first line care and that if that was unsuccessful, to come back and see what clinical trials may be open at that time.

3 - MD Anderson Cancer Center - while Mayo Clinic is the #1 hospital in the nation, MD Anderson is the #1 place for cancer care. It's literally all they do.  My meeting with them was the most informative. They are the ones leading the discussion on the GI (folfox) treatment and have complete stopped recommending the ovarian (taxol platinum) chemo regime. Their thinking: if it looks like a GI cancer treat it like a GI cancer, no matter where it starts. Mayo doesn't have statistics on this because they are waiting for MD Anderson to create the statistical reports! For what it's worth, 80% of colon cancer survivors were alive after 5 years, which is a lot better than my 20-60% outlook, and the 2-year projection I had back in January.  Needless to say - I really liked their statistics!

In addition to outlining why they do this, they listed several proactive steps to take now while we have time so that doors would be open for me if I needed to look at clinical trial options. They were also willing to outline several clinical trials that might apply to my situation. It was clear they had a vision for what post-chemo treatments might be and were willing to share them.

I appreciated their proactive creativity. They made me feel like a priority and an important part of the conversation. So, this week I will be meeting with my primary care team at Northwestern to see if they are willing  to move forward with the steps MD Anderson outlined. This means that chemo will be pushed out one final week. I predict I will start on Tuesday March 28, but that may change. 

In the meantime, Brigham and I have started prepping our space for a minor remodel. We are prepping the wood paneling for paint! Goodbye 1970's and hello 2020! I can't wait! The process is going faster than I originally anticipated, so I'm crossing my fingers that we can get a bunch of it done before chemo starts. If I'm going to be going through hell, I want home to feel like home. Here's to making that happen!