Round Three Part One Completed

Earlier today or maybe it was yesterday I’m not sure anymore, I posted the technical why behind the new drug in the mix, my KRAS wild-type result and the left-sided tumor biology, and what it all means for how my treatment is being built. That post was the science. Today is all about Round three, phase one being behind me and my seven hour day of chemo at the infusion center at Northwest Cancer Centers, in my own words, in real time.

The morning, and the hair

The day started with a long, hot shower and a comb. I worked through my hair slowly, on purpose, trying to get as much out as I could in one place where I could actually clean it up. I am adjusting to shedding handfuls daily. People always assume I have really thick hair. I do not. I have a lot of thin strands, which is its own kind of mess when it starts coming out. I am constantly cleaning up after myself, strands stuck to my pillow, strands on the floor I did not notice, strands on my shirt. It is a strange thing to grieve in pieces. The extra long shower was in anticipation of NOT being able to shower for the next 3-4 days:( Can’t get my pump wet and can’t shower until after the the shot injects in my arm around 530 pm Saturday night. Good times.

Getting to the chair

We got to the cancer center at 9 AM. No labs this time, no extra stops, straight back to my favorite pod and recliner in the southeast corner. From that chair I can look out in the near distance and see cars heading south on I-65 and, just next to me, multiple construction sites going up in real time to support the medical infrastructure that exploded in recent years. Crown Point, Indiana (aka the County Seat) is in the middle of a massive growth spurt and you can feel it from this window. National brands are landing here at a pace that honestly makes my head spin. We recently got a Dutch Bros coffee, which, believe it or not, is a big deal around here and one that reminds me of being a Sun Devil mom. Gina exposed me to this vibrant joint in Tempe or Phoenix when she was as ASU 2016-2020. Now look, we have a Dutch Bros ourselves:)

There is so much to say about this city. Northwest Indiana is becoming a real sports mecca, 35 miles south of Chicago, two hours north of Indianapolis, and our sports facility that I co-own with my husband sits right in the middle of it. The Great Lakes Sports Hub is an 8.5 acre site with multiple buildings and external businesses and tenants. While my husbands focus is elite baseball and softball development, we have team rentals, sports performance gym with personal trainers, a commissary commercial kitchen and cafe, recovery studio with sauna/cold plunge and all the compression toys you need. But what people don’t realize is that it is NOT just for baseball and softball. We rent and train elite athletes and the place is alive with rentals soccer, basketball, football, lacrosse, and so more external organizations rent and bring their athletes here to train. It was once a dilapidated, abandoned family fun center, an 18 hole miniature golf course, go karts, outdoor batting cages, and a beat up air-compressed dome that had been wrecked by use as an indoor golf range. It was my husband’s vision for a decade to build such a comprehensive sports facility but when he picked this place I was full of doubt and wow was I wrong. We took the whole property and turned it into something this community can be proud of. Watching that evolve has been one of the great joys (and stressors) of the last few years. I’m particularly proud of our podcast studio and community event friendly backyard that I used Gemini to design:) we love hosting graduation parties, corporate events, etc.

OK, that was a tangent but now back to your regularly scheduled cancer focused show….

Round three “Marathon” infusion day. I am calling this part one because right now I am already home, on the couch, with my little pump friend who helps me battle this even while I sleep. 46 hours of companionship every two weeks.

After Bobby dropped me off at the NCC, he grabbed us breakfast sandwiches from Chick-fil-A. Leslie brought me a beautiful homemade yogurt parfait with granola and fresh fruit. The cancer center always offers free Jimmy John's sandwiches to infusion patients throughout the day, every day, which is such a kind touch. Angela drove me home tonight and brought me my favorite birria soup from Fat Burrito, another one of our family favorites. Honestly, I could not eat much of it. A couple of bites and I was done. I am just not hungry right now.

Here is my rookie mistake of the day. I took my anti-nausea pill this morning before heading in to infusion day. Turns out I was supposed to take it tonight. The upside, I slept a solid two hours in the chair, which made the whole day fly by. The downside, lesson learned, read the label twice.

Aunt Tina was there the entire time, like she always is, keeping me company. I am the luckiest niece on the planet to have her!

The Legacy Foundation visit today hit me in the best way…Kelly and Erica from the Legacy Foundation came to see me. I have been on that board for several years now, the time has flown by. Legacy supports an incredible number of programs in Lake County and beyond, and I am very proud of my affiliation with it. If I had been feeling better, I would have and planned to surprise the board by showing up in person yesterday. I just could not muster the energy. Honestly, Yesterday was a really emotionally bad day for me. Today I feel so much better, less stressed, always supported.

I had just woken up from my two hour nap when Kelly and Erica walked in. They presented me with a beautiful plaque, a photo of our board, and messages from so many of the people I have been serving alongside for years. Of course I cried. I am sure everyone is sick of hearing me cry or talk about crying, but, damn, I just feel so much love and gratitude right now, and it comes out in tears. I feel deeply. I love deeply. I am a passionate person in everything I do, and I am feeling love in the most real, intense way from so many pockets of my universe right now.

They also snuck me some Albanese chocolate covered peanuts and what looked like chocolate bonbons, plus some all-natural gummy bears and a gorgeous new Legacy Yeti cup, which I cannot seem to get enough of. I am hauling water into every single room I walk into right now, and that is not easy, by the way. Having these love cups help!!!

A package on the swing

When I got home and checked the mail, then went out on the swing tonight, I opened the most beautiful package from a member of the Service League, Michelle Bouwer. The Service League of Northwest Indiana is a completely volunteer-run organization, in contrast to the Legacy Foundation, which is a large nonprofit that serves other nonprofits.

Maybe one of these days I will write a post on the difference between community foundations and nonprofits, and how they all work together. As a quick taste, the Lilly Foundation of Indianapolis supports community foundations in every single county of Indiana. No exaggeration. Every county. Indiana is very unusual nationally as it is the only state that has foundations in all counties. If I am not mistaken, this is because of Lilly’s support and requirement for support in all corners and rural parts of the state, not just the ones closest to major cities like Chicago, Indianapolis, Louisville or Cincinnati.

The Service League, by contrast, is a group of about 30 women, all volunteers, who raise money for causes and nonprofits that mostly support women and children. That has been our mission since 1938. I have held almost every board seat including President in that league over the last 10 years, and next year I will likely move into more of a supporting role as I cross my 10 year mark. All of my volunteer work, in both organizations, revolves around digitization and modernization through technology. I am sort of the unofficial CTO wherever I land which I love.

Round three is officially underway, and I am not doing it alone. I have never done any of this alone. That is the part the science cannot measure, and it is the part that keeps me in the fight.

More to come in part two as the next few days unfold. For now, I am going to put my phone down, sip my water, pet my little battle buddy, and let the medicine do its work.

Love you all. ❤️ 💞 😚 🤗