As I write this entry I am sitting in a pod in the chemotherapy suite at IU Simon. All hooked up with the drugs rolling through my port. My emotions are interbred today. I am downbeat about needing to have another round of chemotherapy. But filled with joy that I qualified for immunotherapy.
Within just hours of publishing my last blog post I received a phone call from IU Simon asking me to be in their office at 8:00 AM the next morning. That sentence sounds so simple and calm. In reality I was driving home in the pouring-down rain after taking all three kids grocery shopping. I was expecting to see the doctor the following week, based on his schedule, so I was completely surprised by the call asking us to come the next morning. At eight AM. In that crazy post-shopping-with-three-kids, soaking-wet-from-the-rain mindset, I responded with “I’ll need to do some laundry.” This is who I am. I started thinking about the logistics of the kids without even saying “Yes, we’ll be there,” first. All that to say, we quickly made arrangements for our babies and were in Indianapolis first thing Tuesday morning to meet with the doctor.
The tumor board had reviewed my case again that morning, right before our appointment. They had determined that I needed to go down one of two paths. Either surgery right away or a combination of immunotherapy and chemotherapy. Immunotherapy has a great success rate. It’s what Jimmy Carter had. The problem for me was that you can’t just be prescribed immunotherapy, you have to qualify for it. In my case my tumor had to test PD_L1 positive. So, they sent a biopsy of my tumor to a lab to test whether or not it was positive or negative. We left that doctor’s appointment knowing that if it was positive, I’d start chemo- and immunotherapy soon. If it was negative, I’d have surgery and then we’d search and research any and all options. We were told it would take 8–14 days to get a result. That was Tuesday, April 30. In the meantime, we moved forward with meeting surgeons and getting that scheduled since it would entail having three surgeons operate on me during one surgery. That’s a lot to juggle.
When we left the hospital that day we felt like we were at a fork in the road. One way being life and one being I don’t know what. It was hard to focus and concentrate on much at all. I can’t even begin to describe the ups and downs we’ve had these past few months, weeks, and days.
On Friday, May 10 at 5:27 in the evening we were waiting in line to be seated for our daughter’s ballet recital. While in line, Kai pooped. He does that. A lot. I took him to the bathroom and changed that sweet boy. When I got back to the line my parents had arrived and were standing where I had left Tim. I saw him pacing down the hall, on the phone. My mom said, “He’s on an important phone call you’ve been waiting for.” The next thing I know he looked up at me and gave me a thumbs up.
I just lost it. I ran to him and I cried and cried and cried. I cried a lot and loudly. Everyone who saw or heard me must have thought I was crazy. But I was so, so, so excited.
The nurse on the phone told us we need to be at their office at 11:00 on Monday morning to start immunotherapy and chemotherapy. We don’t know how many cycles of this I’ll have, or what the next few months will look like.
We have a few details to figure out, but we needed to start this right away. We do know that I’ll lose my hair again. And I’ll feel sick. But I am happy. So happy.