{Hopefully} a Third of the Way There!

Well here we go again! Can't believe it's already been two weeks since I was in Houston for another round of treatment -- time is weird these days...

Two weeks ago I had my second cycle of the clinical trial (and my third overall infusion (out of hopefully 9 total)). It was the same as my first round of the clinical trial where it only included immunotherapy so in general I felt like I knew what to expect but as with every part of this experience, you can't really predict anything. I've found I really have to take each day at a time because my body is constantly changing and responding in different ways.

I was lucky enough to have one of my longest and dearest friends from Santa Barbara, Hailey, join me in Houston. Hailey and I became very close friends in high school, did the "long distance friendship thing" during college :), and then both ended up in Austin right after we graduated. She was kind enough to offer to drive me to Houston, keep me company in the hotel, join me at my appointments, and be there to keep my hopes up during the infusion. We had such a good time together! Though I wouldn't wish this experience or treatment on anyone, it was a really nice distraction to have a close friend there to keep me company and keep me entertained during such a difficult time. All in all the trip went smoothly -- we drove to Houston Wednesday evening, I had bloodwork first thing on Thursday, saw Dr. Nair late Thursday morning, had my infusion Thursday afternoon, and we were able to head home to Austin Thursday evening. Dr. Nair greeted me with a hug (as he does in every appointment now) and was eager to hear how I was feeling. In general, he was very pleased with my bloodwork and how my body appears to be responding to treatment. He was happy to hear I was continuing to experience improvements in my symptoms and pain from the disease itself. Though he recognized we have a long way to go and still a lot we don't know, he left me feeling optimistic after my appointment which was a great feeling going into my infusion that afternoon.

Unfortunately, this round of immunotherapy hit me way harder than the first cycle when it comes to side effects. The side effects didn't start until a few days after leaving Houston, but unfortunately I felt awful. I had some of the same symptoms as the first time, like unbelievable exhaustion and headaches, but also was faced with new, intense symptoms, like stomach aches and extreme nerve pain down my legs and feet. Yesterday was the first day I felt "human" in the last 8 days. Let me tell you...last week was rough. Both physically and mentally. It was really difficult to wake up each morning hoping I would get some relief and instead be faced with another day of not feeling well. The nerve pain made my exercise and ability to get out of the house for walks difficult and it wore on me mentally. Tyler was an angel and was very patient with me while I felt down and discouraged by it all. He continued to be his amazing positive self and helped me focus on getting through each day. He even helped me motivate to go to a concert of a favorite artist on Saturday -- I had bought tickets months ago and though it seemed hard to imagine that I was up for it, we both knew it would be harder for me mentally if I didn't make it. We went to one of my favorite restaurants beforehand, ate some yummy pizza, and then got a pedicab to the show. Though the concert felt difficult for me and I had to take breaks to sit down and just listen to a lot of it, I am so happy that I went. Music is good for the soul <3

After sleeping basically all day Sunday, I woke up feeling more energetic on Monday. As I exclaimed to Tyler yesterday evening, "I finally felt like a human today!" I have to keep reminding myself this is all part of the journey. It's definitely not an easy one and continues to test me mentally in ways I never imagined. Two weekends ago I was heartbroken to be missing one of my best friend's weddings and was feeling the unfairness of this disease. This last weekend I was feeling tired and overwhelmed by the seemingly never ending side effects from treatment. Sometimes it is just hard and that's okay. I also need to honor that and give myself some grace.

But today I am so grateful for Tyler, my family, my coworkers, and my friends who continue to lift me up, especially on the hardest days. Time to hopefully enjoy a week more of feeling "good" before I head back to Houston on the 26th. 3 weeks in between cycles sure goes fast when you feel like poop for half of it! :)