The Body and the Brain

Today I woke up with clarity and more drive, but my body isn't there yet. It's like my body is saying 'slow down' and my brain is saying 'nope, you got this'. Somehow, they need to meet in the middle. I've had extreme fatigue, and I'm having a little trouble breathing from all the pressure from my enlarged liver and distended abdomen. But I feel like so much progress has been made with my plan that I'm almost looking forward to Tuesday, to see if I get any relief from this marathon of chemo I'm going to be running. I built some extra functions into the website yesterday, so if you look in the menu, you'll see resources have been added from my learnings from AccessHope, University of Chicago, Northwestern and a few other places. I've connected the clinical trials API, which is really interesting to read. One thing I’ve been thinking about a lot is the incredible increase in cases in the rate at which they are increasing for young people, younger than me. People in their 40s getting colon cancer are left and right. Disturbing trend, aggressive cases where things move fast in the wrong direction.

On a positive, I'm trying to really keep up with all the amazing little acts of kindness people have been showing over the last week, whether it's through a gift, food, or something they sent in the mail. All of it is quite beautifully overwhelming. So, I created a 'thank yous' section on the website. I cannot thank everybody enough. The most meaningful and joyous part of my day is when I go in and read messages and see names I haven't seen in a while, or just messages of hope or positivity. I'm so grateful for all of that, and it means a lot. I really love it when people use the voice memo and video or photo feature. Come on people don’t be afraid to try something new you know this is something that I push for, make me proud lol!!!!

The coordination of care between all of these hospital systems, clinics, and cancer centers is quite overwhelming, I have to tell you, even for somebody who enjoys being an arranger, according to Clifton Strengths. It is not for the faint of heart. I remember doing this for my mom not too long ago, so I've already had a practice round and cancer training 101 as a primer to my own journey here. I am grateful that I have the strength to manage it all, because there is a lot going on and a lot to line up. But, damn, am I proud of how fast everything has come together. And I remember feeling the same sense of pride when my mom was diagnosed. We wasted zero time and got right to action, which is what I prefer to do in all aspects of my life.

Today at 1pm have my oncology labs to clear the way to start FOLFOX Tuesday, May 5. My little pump will then attach to my port and I’ll wear it 46 hours at home before my “pump off” appointment 48 hour later, May 7. Another appointment I have today is a follow up with my resource coordinator Liana with AccessHope at 3pm. They are also expediting my EAR which is that independent THIRD opinion with the consortium of top cancer experts hospitals in the country.

God give me strength to manage the pain and discomfort as I walk through these next several days. Thank you to all who are praying and rooting for me, I feel it big time.